Archive for the ‘Lyme’ Category

Lyme Disease Misinformation Has Physicians Searching For Guidance Part 3

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/31256356

Lyme disease misinformation has physicians searching for guidance (Part 3)

Carl Tuttle

Hudson, NH, United States

JAN 25, 2023 — 

This petition update is a continuation of the attempts to alert Dr. Arnold Chen, Senior Researcher at Mathematica that the CDC (Grace Marx, MD, MPH) is deliberately misrepresenting Lyme disease which will lead to inappropriate guidance for the medical community.

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “achen@mathematica-mpr.com” <achen@mathematica-mpr.com>, “info@mathematica-mpr.com” <info@mathematica-mpr.com>, “pdecker@mathematica-mpr.com” <pdecker@mathematica-mpr.com>
Cc: “lwx1@cdc.gov” <lwx1@cdc.gov>, “frederick.chen@ama-assn.org” <frederick.chen@ama-assn.org>, “gmarx@cdc.gov” <gmarx@cdc.gov>, “acoyne@mathematica-mpr.com” <acoyne@mathematica-mpr.com>, “jconstantine@mathematica-mpr.com” <jconstantine@mathematica-mpr.com>, “ctrenholm@mathematica-mpr.com” <ctrenholm@mathematica-mpr.com>, “tbarnes@mathematica-mpr.com” <tbarnes@mathematica-mpr.com>, “sboudreau@mathematica-mpr.com” <sboudreau@mathematica-mpr.com>, “jdevallance@mathematica-mpr.com” <jdevallance@mathematica-mpr.com>, “sara.berg@ama-assn.org” <sara.berg@ama-assn.org>
Date: 01/24/2023 8:29 AM
Subject: Fwd: Lyme Disease Updates and New Educational Tools for Clinicians -Grace Marx, MD, MPH

Mathematica
Princeton, NJ
Attn: Arnold Chen, Senior Researcher
Dear Dr. Chen,

Please see the email below dated one day before Dr. Marx presented her Clinician Outreach and Communication Activity (COCA) Webinar on May 20, 2021.

There are 9 important facts about Lyme disease missing from Dr. Marx’s presentation and I assume these facts will also be missing from the upcoming guidance created by Mathematica
Carl Tuttle
Hudson, NH

Email to Grace Marx, MD, MPH:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “lwx1@cdc.gov” <lwx1@cdc.gov>, “coca@cdc.gov” <coca@cdc.gov>
Cc: Lynn Durand <ldurand@crhc.org>, Tricia Aiston <tricia@aiston.net>, “Dr. Frank Hubbell” <bearhubbell@aol.com>, Mary Mayville <mj4ok@aol.com>, “Dr. Rex Carr” <rcarrmd@comcast.net>, “benjamin.chan@dhhs.nh.gov” <benjamin.chan@dhhs.nh.gov>, “apara.dave@nhms.org Apara” <ApDave@ehr.org>, Charles McMahon <cmcmahon55@gmail.com>, William Marsh <wmarshmd@gmail.com>, Kathie Fife <kathie@kathiefife.com>, Christina Dyer <Christina.Dyer@leg.state.nh.us>, Jeb Bradley <Jeb.Bradley@leg.state.nh.us>, Mary Freitas <Mary.Freitas@leg.state.nh.us>, Tom Sherman <Tom.Sherman@leg.state.nh.us>, Jeb Bradley <jebebrad@metrocast.net>, Michelle Wagner <mwagner@naminh.org>, “yzhang@jhsph.edu” <yzhang@jhsph.edu>, “jc.salloway@unh.edu” <jc.salloway@unh.edu>, “barbarabuchman@ilads.org” <barbarabuchman@ilads.org>, “dandmhamp38@gmail.com” <dandmhamp38@gmail.com>, “killinger888@comcast.net” <killinger888@comcast.net>, “drhegnauer@h2health.org” <drhegnauer@h2health.org>, “Gary.Woods@leg.state.nh.us” <Gary.Woods@leg.state.nh.us>, “chris.smith@mail.house.gov” <chris.smith@mail.house.gov>, “Sununu.Press@nh.gov” <Sununu.Press@nh.gov>, “alexa011@mc.duke.edu” <alexa011@mc.duke.edu>, “governorsununu@nh.gov” <governorsununu@nh.gov>
Date: 05/19/2021 1:20 PM
Subject: Lyme Disease Updates and New Educational Tools for Clinicians

Lyme Disease Updates and New Educational Tools for Clinicians
https://emergency.cdc.gov/coca/calls/2021/callinfo_052021.asp

During this COCA Call, presenters will review updates in Lyme disease epidemiology, diagnosis, treatment, and prevention and share new educational tools for both healthcare providers and their patients.

“Planners have reviewed content to ensure there is no bias.”

May 19, 2021

Grace Marx, MD, MPH
LCDR, U.S. Public Health Service
Medical Epidemiologist, Bacterial Diseases Branch
Division of Vector-Borne Diseases
Centers for Disease Control and Prevention

Dear Dr. Marx,

As a member of the New Hampshire Lyme Disease Study Commission appointed by Governor Chris Sununu, I have some concerns/questions regarding your upcoming presentation.

If there is to be no “bias” in your presentation does that mean that the CDC will finally recognize persistent infection after extensive antibiotic treatment? Please take a moment to read my letter to the editor published in the BMJ as I have identified seven documented cases of treatment failure; there are actually hundreds.

Letter to the editor of the BMJ

Lyme borreliosis: diagnosis and management
https://www.bmj.com/content/369/bmj.m1041/rr-1

Dr. Marx… will you be sharing the following facts/references with the intended audience?

  1. It takes 4-6 weeks for humans to fully develop both IgM and IgG antibodies to Lyme disease in order to produce a positive Western blot test result. [1]
  2. Treatment delay of over thirty days often leads to Chronic Lyme Disease. [2]
  3. Bulls-eye rash has been recorded in less than 50% as reported by the State of Maine Department of Health. [3]
  4. Seronegative disease has been identified [4] (no antibody production to infection producing a false negative lab result)
  5. You can become horribly disabled or die [5] from Lyme disease and routinely denied Social Security Disability Compensation.
  6. 35% of acute Lyme disease patients (21out of 63) who were treated with the IDSA’s short course of antibiotics were found to meet the case definition of “Post Lyme Disease Syndrome” at six months. (Johns Hopkins) [6]
  7. Single dose Doxycycline after tick bite as prophylaxis against Lyme disease failed 80% of the time in the mouse model so why would this be recommended in humans? [7]
  8. There are hundreds of references to failed treatment of the one-size-fits-all IDSA Lyme treatment guideline. [8]
  9. Congenital transmission of Lyme disease has been identified dating back to 1985 [9]

I want to make this perfectly clear Dr. Marx; The current dogma propagated for the last thirty years has misguided an entire medical community and misclassified Lyme as a simple nuisance disease; “hard to catch and easily treated.” [10] Take a moment and read the public comments from the Tick-Borne Disease Working Group website and you’ll see that we have a public health crisis on our hands with hundreds of thousands (if not millions worldwide) left in a debilitated state. The deliberate bias against persistent infection after extensive antibiotic treatment is 100% responsible for this unimaginable pain and suffering.

Will your presentation continue on this path of deception and omit the facts/references I have provided?
A response to this inquiry is requested. Please hit reply-all.

Respectfully Submitted,

Carl Tuttle
Hudson, NH

Cc: All members of the NH Lyme Study Commission
Governor Chris Sununu

When “evidence-based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science? -Carl Tuttle

References: Please read them!

1. Notice to Readers Recommendations for Test Performance and Interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease https://www.cdc.gov/mmwr/preview/mmwrhtml/00038469.htm

2. Treatment Delays Increase Risk of Persistent Illness in Lyme Disease
https://www.hopkinslyme.org/news/treatment-delays-increase-risk-of-persistent-illness-in-lyme-disease/

3. State of Maine Department of Health has been tracking incidence of rash and found an average of under 50% for the four years listed below:

2011 42%
http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2011-lyme-legislature.pdf

2012 49%
http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2012-lyme-legislature.pdf

2013 51%
http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2013-lyme-legislature.pdf

2014 57%
http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2014-lyme-legislature.pdf

4. Seronegativity in Lyme borreliosis and Other Spirochetal Infections 16 September 2003
https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

5. Deaths From Lyme Disease Compiled by: John D. Scott, Research Scientist 17 April 2018
https://www.dropbox.com/s/eo794dx7zspc1ln/Ld%20deaths.doc?dl=0

6. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here?http://www.lymemd.org/pdf/aucott_et_al_qol_research.pdf

7. A sustained-release formulation of doxycycline hyclate (Atridox) prevents simultaneous infection of Anaplasma phagocytophilum and Borrelia burgdorferi transmitted by tick bite
https://www.dropbox.com/s/jc0h9g9arjhc8l1/Zeidner%202008.pdf?dl=0

8. 700 articles LYME Evidence of Persistence-V2
https://www.dropbox.com/s/n09sk90eo6xz7ua/700%20articles%20LYME%20EvidenceofPersistence-V2.pdf?dl=0

9. Congenital Transmission of Lyme
https://www.dropbox.com/s/xlju8w25phkypy0/Congenital%20Transmission%20of%20Lyme.pdf?dl=0

10. Lyme Disease Is Hard to Catch And Easy to Halt, Study Finds

New York Times By GINA KOLATA Published: June 13, 2001
http://www.nytimes.com/2001/06/13/us/lyme-disease-is-hard-to-catch-and-easy-to-halt-study-finds.html

___________________________________________________________________________

Announcement of Dr. Marx’s Presentation:

                Notice from the CDC

Lyme Disease Updates and New Educational Tools for Clinicians
Date: Thursday, May 20, 2021

Time: 2:00 pm – 3:00 pm (ET)

From: Centers for Disease Control and Prevention < no-reply@emailupdates.cdc.gov>
Sent: Monday, May 17, 2021 11:15 AM
Subject: Reminder: CDC COCA Call—Thursday, May 20: Lyme Disease Updates and New Educational Tools for Clinicians

Go here for Part 1

Go here for Part 2

The Many Presentations of the Lyme Disease rash

https://danielcameronmd.com/many-presentations-lyme-disease-rash/

THE MANY PRESENTATIONS OF THE LYME DISEASE RASH

lyme-disease-rash

The general public, as well as practicing clinicians often believe that the rash indicative of Lyme disease always presents in a bull’s-eye pattern. This is not correct. In this study, investigators sought to characterize various presentations of the rash in Lyme disease patients, in an effort to assist clinicians in recognizing the broad spectrum of EM lesions.

In the study “The Spectrum of Erythema Migrans in Early Lyme Disease: Can We Improve Its Recognition?,” investigators examined images of lesions from 69 participants, including 43 men and 26 women, suspected to have early Lyme disease.  The majority of participants (83%) presented with a single lesion.¹

The images were retrospectively evaluated by a dermatologist and a family practitioner with expertise in early Lyme disease.

The authors found that 35 lesions (51%) were erythema migrans (EM); 23 lesions (30%) were considered to be possible early EM or tick bite reactions, and 11 (16%) were thought not to be EM, but rather other diagnoses, including ringworm, allergic contact dermatitis, and mosquito bites.

“Only two lesions (6%) were observed with a classic bull’s eye or ring-within-a-ring pattern.”

EM rashes were reported most frequently to appear on the abdomen, thigh, back and hip.

Participants with an EM rash reported the following symptoms: chills, fever, night sweats, headache, fatigue, body aches, nausea and neuralgia.

Most EM lesions appeared:

  • Uniform (51%)
  • Pink (74%)
  • With an oval shape (63%)
  • Well-defined borders (92%)

What did early EM or tick bite reactions look like? They “were typically <5 cm in size (74%), red (52%), round lesions (61%), with a punctum present (100%),” according to the authors.

Lesions that were not EM rashes appeared: pink or red (64%), round (55%), or uniform (45%) lesions, but also had raised (25%) or irregular borders (33%).

“EM commonly occurs in forms that are not the classic bull’s eye.”

“Only 14 (20%) participants overall had positive laboratory evidence for LD; these included 13 (37%) of the participants with EM-classified lesions,” the authors wrote.

VIEW PHOTOS OF EM RASHES

The authors suggest that “education should deemphasize the bull’s eye form and stress the wide variability in EM instead and the fact that many of them present as a uniform, homogeneous lesion.”

The authors conclude:

  • “Patients often present with lesions that may represent the very early stage of EM or tick bite reactions, and most patients will test negative on currently available laboratory tests…”
  • “Clinicians may not be aware of all existing variations, such that some LD patients with EM may not be immediately recognized and promptly diagnosed and treated. Hence, further improvements in terms of clinician awareness and recognition of EM are needed.”

All About Kids With Lyme, PANS, & Mold Illness

https://vimeo.com/765481249  Video Here (Approx. 1 hour 30 Min)

Ticktective with Dana Parish: All About Kids with Lyme, PANS, Mold Illness

Learn about the signs of Lyme and co-infections in children in this installment of Bay Area Lyme Foundation’s TICKTECTIVE podcast.

Dana Parish, co-author of the book CHRONIC, interviews Charlotte Mao, MD, MPH, a Harvard-trained pediatric infectious diseases physician and Invisible International’s curriculum director.

In this discussion, Dr. Mao reviews Lyme testing, Pediatric Acute-onset Neuropsychiatric symptoms (PANS) triggered by Bartonella, and how mold toxins can complicate the course of illness.

For more:

Study: Controlled Burns Reduce Ticks, Lyme Disease

https://www.bayjournal.com/news/wildlife_habitat/study-controlled-burns-reduce-ticks-lyme-disease/article

Study: Controlled burns reduce ticks, Lyme disease

By Ad Crable

Jan. 13, 2023

Prescribed fire

A prescribed fire takes place at the Arboretum at Penn State. (Courtesy of the Arboretum at Penn State)

As tick-borne Lyme disease continues to spread in Pennsylvania and other Chesapeake Bay drainage states, a new study suggests more use of prescribed burns on public and private forests could help reduce both the numbers of ticks and incidence of the disease.

In a paper published in Ecological Applications, researchers from Penn State, the U.S. Forest Service and New Jersey Department of Environmental Protection said the increased use of prescribed fire by forest managers to control invasive plants, improve wildlife habitat and restore ecosystem health can also help knock down the tick problem.  (See link for article)

________________

**Comment**

For more:

    Lyme Misinformation Has Physicians Searching For Guidance

    https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u

    Lyme disease misinformation has physicians searching for guidance

    Carl Tuttle

    Hudson, NH, United States

    JAN 20, 2023 — 

    It appears that the CDC has partnered with Mathematica to start working on the “disinformation campaign” for the upcoming Lyme vaccine brought to you by Pfizer who paid the the largest health care fraud settlement in history for fraudulent marketing. $2.3 Billion!

    Why not start an email campaign and tell these folks how Lyme disease has impacted your life?

    Email addresses:

    Arnold Chen achen@mathematica-mpr.com
    Frederick Chen frederick.chen@ama-assn.org
    Grace Marx gmarx@cdc.gov
    Sara Berg sara.berg@ama-assn.org

    Email to Arnold Chen, Senior Researcher at Mathematica…

    ———- Original Message ———-
    From: CARL TUTTLE <runagain@comcast.net>
    To: “achen@mathematica-mpr.com” <achen@mathematica-mpr.com>, “info@mathematica-mpr.com” <info@mathematica-mpr.com>
    Cc: “grace.marx@cuanschutz.edu” <grace.marx@cuanschutz.edu>, “lwx1@cdc.gov” <lwx1@cdc.gov>, “frederick.chen@ama-assn.org” <frederick.chen@ama-assn.org>
    Date: 01/19/2023 5:53 PM
    Subject: Lyme disease misinformation has physicians searching for guidance

    JAN 12, 2023

    Lyme disease misinformation has physicians searching for guidance
    https://www.ama-assn.org/delivering-care/public-health/lyme-disease-misinformation-has-physicians-searching-guidance

    “False and misleading information about the diagnosis and treatment of Lyme disease is spreading and creating confusion for both physicians and patients,” Dr. Chen added. The report conducted with the CDC and Mathematica Policy Research is just the start and “will highlight some of the disinformation that patients with persistent, medically unexplained symptoms attributed to Lyme disease have been exposed to and how some physicians respond to that,” he said.

    Mathematica
    Princeton, NJ
    Attn: Arnold Chen, Senior Researcher

    Dear Dr. Chen,

    Could you please answer the following questions:

    1. Will the CDC and Mathematica report include the following reference:

    European Neurology 1995

    Seronegative Chronic Relapsing Neuroborreliosis
    https://www.karger.com/Article/Abstract/117104
    Lawrence C., Lipton R.B., Lowy F.D., Coyle P.K.d

    Abstract

    We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.
    ____________________________________________

    2. Will your report include the following references of seronegative Lyme disease:

    Seronegativity in Lyme borreliosis and Other Spirochetal Infections (16 September 2003)
    https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

    3. Will the CDC and Mathematica report include the following:

    Peer Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases (700 References)
    https://www.dropbox.com/s/n09sk90eo6xz7ua/700%20articles%20LYME%20EvidenceofPersistence-V2.pdf?dl=0

    4. Were you aware that the Western blot reporting criteria was manipulated in 1995 to facilitate vaccine development? (Dearborn Conference)

    That manipulation led to a reduction in diagnostic success rate to 31% as reported by Dr. Paul Fawcett during the 1995 Rheumatology Symposia:
     
    1995 Rheumatology Symposia Abstract# 1254 Dr. Paul Fawcett et al.

    See abstract here

    Faulty misleading FDA approved antibody tests cannot be used to gauge treatment failure or success and are absolutely essential for hiding an antibiotic resistant/tolerant superbug.

    What we have been dealing with here Dr. Chen (based on all the suppressed evidence I have shared with you) is deliberate mismanagement of a disease. A chronic relapsing seronegative disease does not fit the vaccine model and that is the root of the disinformation perpetuated by the CDC for three decades. Now you have been informed. What will you do with this information?

    A response to this inquiry is requested.

    Carl Tuttle
    Independent Researcher
    Hudson, NH

    It is difficult to get a man to understand something when his salary depends upon his not understanding it” -Upton Sinclair, American novelist and social reformer

    Cc:

    -Frederick Chen, MD, chief health and science officer at the AMA

    -Grace Marx, MD, MPH, medical epidemiologist with the Bacterial Diseases Branch at CDC’s Division of Vector-Borne diseases

    ________________

    For more: