Archive for the ‘Lyme’ Category

How Much Money is CDC Paying Mathematica to Propagate Their False Lyme Narrative?

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/31334901

How much money is the CDC paying Mathematica to propagate their false Lyme disease narrative?

Carl Tuttle

Hudson, NH, United States

FEB 22, 2023 — 

Please see the latest email addressed to the management team at Mathematica hired by the CDC to promote the false Lyme disease narrative under the guise of “Guidance.”

———- 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>, “jack.resneck@ucsf.edu” <jack.resneck@ucsf.edu>, “jack.resneck@ama-assn.org” <jack.resneck@ama-assn.org>, “todd.unger@ama-assn.org” <todd.unger@ama-assn.org>, “jon.burkhart@ama-assn.org” <jon.burkhart@ama-assn.org>, “karen.kmetik@ama-assn.org” <karen.kmetik@ama-assn.org>, “sanjay.desai@ama-assn.org” <sanjay.desai@ama-assn.org>, “william_henderson@paul.senate.gov” <william_henderson@paul.senate.gov>

Date: 02/22/2023 9:27 AM
Subject: How much money (taxpayer dollars) is the CDC paying Mathematica to propagate their false Lyme disease narrative?

To the management team at Mathematica,

Here are the facts about Lyme disease:

Persistent infection after extensive antibiotic treatment has been identified using direct detection methods in academic centers and autopsy findings [i] yet the average patient cannot obtain these tests to justify how sick they are with their chronic active infection. Serology cannot be used to gauge treatment failure or success which makes it the ideal tool for concealing persistent infection.

Serology has allowed the 30-year dogma to persevere [ii] whereas direct detection methods are exposing the exact opposite.

We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control whatsoever; a public health disaster. And what was the reason for the mishandling of this coexisting hidden pandemic you might ask?

A chronic relapsing seronegative disease does not fit the vaccine model. You cannot prove vaccine efficacy when we do not know who has or does not have the infection.

The rush to create a vaccine here in the United States promoted the denial of persistent infection and focusing on the acute stage of disease hides the horribly disabled.

With nearly 100,000 signatures, the Change.org petition calling for a congressional investigation into the mishandling of Lyme disease has collected 1,100 pages of heart wrenching comments from horribly disabled Lyme patients all across America.

Here are just nine randomly selected comments from patients disabled from Wormser’s “nuisance disease” whose junk science has been financed by the CDC with an open checkbook. (RO1 CK 000152) [iii]

Comments collected from the Change.org petition calling for a congressional investigation:
https://www.dropbox.com/s/d40isfeff5h806o/petition_comments_Oct%2028%202020.pdf?dl=0

1.  My 16 year old daughter has late stage, neurological Lyme Disease. I have watch over the past several years as she has had to give up so much. She has stopped playing sports (basketball, soccer, and softball), dancing, eating many different foods, going to school, and even just spending time with friends. We have been to many different doctors with many different specialties looking for answers and have finally received a clinical diagnosis of Lyme Disease from two doctors who are working together to try to help her. The challenge now is to get her strong enough to endure the treatment that she is facing. We are told it may take years of treatment to get her to a reasonable quality of life. It is devastating to see my daughter struggle with all of this at a time when her friends are enjoy things like prom, graduations, and even just youth group activities while she sits at home suffering. This is a terrible disease!
Catherine Weakley, Virginia Beach, VA

2.  My best friend’s life has been devastated by Lyme Disease for the last several years. If only her doctors had taken her concerns and symptoms seriously in the beginning and administered the proper tests, she may not have gone through so many years of pain. I accompanied her to these appointments and watched first hand as her symptoms were ignored and mis diagnosed over and over again. She has gone through years of suffering that could have been prevented had she been diagnosed at the start and given antibiotics. For the sake of her and the many others who are suffering needlessly I urge you to investigate this matter fully and support education, awareness, acceptance and action throughout the medical community.
Samantha Erin Barragar, Malibu, CA

3.  I have been suffering from Neurological Lyme Disease since I was 15 years old. A year and a half ago, I had a serious flare up that has left me disabled with seizures, tremors, cognitive issues, immobility, and chronic pain. The severity of this disease should not be overlooked, and warrants significant research. The outdated and immoral IDSA guidelines must be investigated for the sake of all current and future persons infected with Lyme. Our voices deserve to be heard!
Caren Dandeo, Middletown, NJ

4.  I’m positive for lyme and co infections and was getting better with treatment, then insurance stopped paying. I’m wheelchair bound now and cannot stand, move, or take care of myself. United HealthCare cited the CDC guidelines of 28 days of antibiotics of treatment. THAT’S NOT ENOUGH.
Doug Frenz, Hudson, OH

5.  I’m only 20 years old and I’ve suffered from Lyme Disease for the past 6 years of my life. For the first few years of my disease I went undiagnosed; doctors would tell me I was crazy, and I continued to get sicker and sicker. My 15 year old sister is also really sick with Lyme and has been for years. It breaks my heart. There has to be something serious done about this epidemic, and fast.
Niki Mitchell, Binghamton, NY, NY

6.  My 4 Lyme tests came back “negative” according to my PCP’s. I was “negative” for 8 years while I did indeed have Lyme. When I visited 2 LLMD’s they both verified that I had Lyme. Had it been caught 8 years prior it could have been cured. Instead, it spread to all parts of my body and brain. I in turn became a burden on the healthcare system and lost all of my assets. Accurate testing MUST be developed!
Serenaty S, New York, NY

7.  I am disabled, in a wheelchair, and currently on IV medicine to try and kill off Lyme, Babesia, and Bartonella. I am in huge debt because insurance refuses to pay for anything – not doctor visits, not medicine, nothing. Too many are sick and dying. Enough.
Wendy Vogt, Redwood City, CA

8.  My husband has been diagnosed with neurological lyme and the coinfections of bartonella and babesia. We spent years going form doctor to doctor trying to find out what he has. His illness reached the point where he is no longer able to work. Our insurance company will not approve the IV antibiotics he needs to get better due to the current CDC guidelines. The illness does not just affect the patient but the entire family. Lyme needs to be addressed.
Kathy Wilder Bichler, Fair Lawn, NJ

9.  Spent over $100,000 dollars to get our son well in Oklahoma. 21 doctors would not recognize Lyme disease because of ignorance. We went out of state to find a LLMD. It is an awful disease and in so many ways. His Lyme test only had one band positive so according to the CDC is not proof of Lyme. Well wrong…he was pulled 5 ticks off himself and 3 days later severally I’ll for the next 2 1/2 years of being homebound. We where lucky we had a savings but I took our retirement money.
Diana Clock, Bixby, OK

Carl Tuttle
Hudson, NH

“In the fullness of time, the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and the entire insurance industry colluded to deny a disease.”   -Kenneth B. Liegner, MD, Internal Medicine, New York, USA

References:

[i] 700 articles LYME Evidence of Persistence (personal Dropbox storage area)
https://www.dropbox.com/s/n09sk90eo6xz7ua/700%20articles%20LYME%20EvidenceofPersistence-V2.pdf

[ii] Lyme Disease Is Hard to Catch And Easy to Halt, Study Finds
New York Times By GINA KOLATA Published: June 13, 2001
https://www.nytimes.com/2001/06/13/us/lyme-disease-is-hard-to-catch-and-easy-to-halt-study-finds.html

[iii] Effective propaganda/racketeering scheme all financed through taxpayer dollars!
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25694689

Category:

Activism, Lyme, Testing, vaccines

Pacemakers for Lyme Carditis

https://danielcameronmd.com/pacemakers-for-lyme-carditis/

PACEMAKERS FOR LYME CARDITIS

pacemaker-lyme-carditis

Some patients with Lyme carditis (LC) require implantation of a pacemaker. Yeung and Baranchuk discussed the need for “preventing unnecessary implantation of permanent pacemakers in otherwise healthy young individuals” in the Journal of the American College of Cardiology in 2019.

By 

Lyme disease can directly infiltrate the heart leading to an exaggerated inflammatory response when spirochetes penetrate the heart. Lyme carditis can appear within 1 to 2 months after the onset of a Lyme disease infection, wrote Yeung and Baranchuk.¹ They point out, the most common presentation of LC (90%) is high-degree atrioventricular (AV) block (AVB).

AV block due to Lyme disease can be successfully treated with antibiotics in a hospital setting. However, in some cases, a temporary or permanent pacemaker is required. In reviewing the literature, Besant and colleagues found that 17.9% of patients with LC required a permanent pacemaker and 10.3% required a temporary and a permanent pacemaker.²

“High-degree atrioventricular block is the most common presentation of [Lyme carditis], and usually resolves with antibiotic therapy.”¹

Yeung et al. highlighted the importance of avoiding a permanent pacemaker “to prevent the inherent risks of pacemaker implantation, including periprocedural infections and complications, lead dislodgement, etc.”

Furthermore, the authors emphasized the importance in avoiding a permanent pacemaker in children. “An unnecessary pacemaker implantation would result in a subsequent lifetime of multiple pulse generator changes, psychological/physical sequelae, and burden of associated cumulative health care costs.”

They concluded, “A systematic approach to the diagnosis and treatment of LC will facilitate the identification of LC in patients with high-degree AVB, thus preventing unnecessary implantation of permanent pacemakers.”

Both a standard transvenous temporary pacemaker lead, or modified temporary–permanent transvenous pacing are available.

“In modified temporary– permanent transvenous pacing, an active fixation lead is attached to a resterilized permanent pace- maker generator taped to the patient’s skin and used as a temporary external device, which allows for early ambulation,” wrote Yeung and Baranchuk.

A permanent pacemaker has been recommended if AV conduction is not restored.

Related Articles:

Successful removal of pacemakers in patients with Lyme carditis

5 things to know about Lyme carditis

How common is Lyme carditis in patients referred for pacemaker implantation?

References:
  1. Yeung C, Baranchuk A. Diagnosis and Treatment of Lyme Carditis: JACC Review Topic of the Week. J Am Coll Cardiol. Feb 19 2019;73(6):717-726. doi:10.1016/j.jacc.2018.11.035
  2. Besant G, Wan D, Yeung C, et al. Suspicious index in Lyme carditis: Systematic review and proposed new risk score. Clin Cardiol. Dec 2018;41(12):1611-1616. doi:10.1002/clc.23102

For more:

Category:

Heart Issues, Inflammation, Lyme, research

Clinical Microbiology Reviews; “Lab Diagnosis of Lyme Borreliosis”

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

Clinical Microbiology Reviews; “Laboratory Diagnosis of Lyme Borreliosis”

Carl Tuttle

Hudson, NH, United States

FEB 21, 2023 — 

Please see the inquiry below addressed to the authors of this publication titled Laboratory Diagnosis of Lyme Borreliosis. There has been no response from Branda or Steere…

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “branda.john@mgh.harvard.edu” <branda.john@mgh.harvard.edu>, “asteere@mgh.harvard.edu” <asteere@mgh.harvard.edu>
Cc: “cmr-eic@asmusa.org” <cmr-eic@asmusa.org>, “jdienbard@chla.usc.edu” <jdienbard@chla.usc.edu>, “fcfang@uw.edu” <fcfang@uw.edu>, “louisa.messenger@unlv.edu” <louisa.messenger@unlv.edu>, “johann.pitout@cls.ab.ca” <johann.pitout@cls.ab.ca>, “schuetz.audrey@mayo.edu” <schuetz.audrey@mayo.edu>, “cmstaley@umn.edu” <cmstaley@umn.edu>, “achen@mathematica-mpr.com” <achen@mathematica-mpr.com>, “info@mathematica-mpr.com” <info@mathematica-mpr.com>, “pdecker@mathematica-mpr.com” <pdecker@mathematica-mpr.com>, “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>, “jack.resneck@ucsf.edu” <jack.resneck@ucsf.edu>, “jack.resneck@ama-assn.org” <jack.resneck@ama-assn.org>, “todd.unger@ama-assn.org” <todd.unger@ama-assn.org>, “jon.burkhart@ama-assn.org” <jon.burkhart@ama-assn.org>, “karen.kmetik@ama-assn.org” <karen.kmetik@ama-assn.org>, “sanjay.desai@ama-assn.org” <sanjay.desai@ama-assn.org>, “william_henderson@paul.senate.gov” <william_henderson@paul.senate.gov>

Date: 02/10/2023 9:02 AM
Subject: Clinical Microbiology Reviews; “Laboratory Diagnosis of Lyme Borreliosis”
Clinical Microbiology Reviews
Published online 2021 Jan 27
 
Laboratory Diagnosis of Lyme Borreliosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7849240

John A. Branda and Allen C. Steere

“Lyme borreliosis is caused by a growing list of related, yet distinct, spirochetes with complex biology and sophisticated immune evasion mechanisms.”

Dear Drs. Branda and Steere,
I read your manuscript with great interest. While searching for the word “seronegative” I came across seven results in your publication but could not find the following references:

There is a wrongful death lawsuit in the state of NY where a 17yr old collapsed in his front yard later pronounced dead at the hospital. His Lyme test was negative.

1. Wrongful death suit shows pitfalls of IDSA Lyme guidelines
Joseph Elone died of Lyme disease
By Mary Beth Pfeiffer Sept 9, 2019
https://www.lymedisease.org/elone-wrongful-death-lawsuit-lyme/

In Pennsylvania there was a civil lawsuit against doctors who misdiagnosed Lyme disease as multiple sclerosis. The patient had four negative serologies but the fifth one came back positive.

2. Pa. Supreme Court to Hear Medical Liability Case with Statute of Limitations Implications
https://www.pamedsoc.org/list/articles/Statute-of-Limitations

Duke University Oncologist Dr. Neil Spector required a heart transplant; his Lyme serology was repeatedly negative.

3. Gone in a Heartbeat: A Physician’s Search for True Healing
https://lymediseaseassociation.org/book-list/gone-in-a-heartbeat-a-physician-s-search-for-true-healing-by-neil-spector-md/

I would like to point out the following case study from Stony Brook Lyme clinic. I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication. Standard antibody tests were negative.

4. Seronegative Chronic Relapsing Neuroborreliosis.  
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Lawrence C. Lipton R.B. Lowy F.D. Coyle P.K.

Department of Medicine, Department of Neurology, and Division of Infectious Diseases, Albert Einstein College of Medicine, and Department of Neurology, State University of New York at Stony Brook, New York, NY., USA

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.

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

Here is a recent wrongful death lawsuit in the state of Maine: (I understand Mr. Smith’s Lyme test was negative)

Mercy Hospital, physician ordered to pay $6.5M for deadly misdiagnosis
Pete Smith, 25, died in 2017 after a doctor failed to recognize the signs of Lyme Disease
https://www.wmtw.com/article/mercy-hospital-physician-ordered-to-pay-dollar65m-for-deadly-misdiagnosis/42745675

Regardless of your so-called “advances in diagnostics” these references prove serology has always been the wrong diagnostic tool for an infection that often produces no detectable antibodies in all stages of disease. 1   “Spirochetes with complex biology and sophisticated immune evasion mechanisms” as you pointed out in your summary.

Is there a reason why the references I have presented here are missing from your publication?
A response to this inquiry is requested.
A copy of this inquiry has been sent to the management team at Mathematica Policy Research who have recently been contracted by the CDC.

Respectfully submitted,
Carl Tuttle
Hudson, NH

Cc: CMR Editorial Board

Reference:

1.  HB490 COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30346445

In November 2021, a commission created by the State of New Hampshire finished an exhaustive investigation of Lyme disease test accuracy. The commission reported that only 20-30% of people exhibit antibodies at detectable levels, and the commission concluded that “CDC-approved serologic tests for Lyme disease are unreliable in all stages of the disease.”

Category:

Activism, Lyme, research, Testing

Fibromyalgia Associated With Borrelia-Specific T Lymphocytes

https://www.eurekaselect.com/article/129522

Antinuclear antibody seropositivity in fibromyalgia associated with Borrelia-specific T lymphocytes

Author(s): Basant K. Puri*, Gary S. Lee and Armin Schwarzbach

DOI: 10.2174/1573397119666230215124048

Current Rheumatology Reviews 2023; 19()

Abstract

Background: Our group have recently reported that there is no evidence of an association between fibromyalgia and Borrelia-specific T lymphocytes. However, a small number of case reports has suggested that infection by the bacterial genus Borrelia may be associated with the presence of antinuclear antibodies (ANAs).

Objective: To test the hypothesis that those fibromyalgia patients who are ANA seropositive are more likely to show evidence of Borrelia-specific T lymphocyte reactivity than those who are seronegative.

Methods: T lymphocyte reactivity to Borrelia burgdorferi sensu stricto (full antigen) was assessed using the enzyme-linked immunospot and serum ANA status was assessed using immunofluorescence in 27 fibromyalgia patients fulfilling the revised diagnostic criteria of the American College of Rheumatology.

Results: The ANA seropositive and seronegative groups were matched for age, sex and ethnicity; the T lymphocyte reactivity to Borrelia burgdorferi sensu stricto (full antigen) in the former group (mean 5.60) was significantly higher than that in the seronegative group (mean 1.81; p < 0.05).

Conclusion: This novel study points to an association of ANA seropositivity in fibromyalgia with Borrelia-specific T lymphocytes.

For more:

Category:

Lyme, research, Testing

National Academies Take on Thorny Issue of ‘Long-Haul’ Diseases

https://www.lymedisease.org/nasem-long-haul-diseases/

National Academies take on thorny issue of “long-haul” diseases

Feb. 17, 2023

The National Academies of Sciences, Engineering, and Medicine (known collectively as NASEM) are private, nonprofit institutions that study complex challenges facing our country and give expert guidance on how to solve them.

NASEM has a reputation for providing independent, objective and nonpartisan advice with high standards of scientific and technical quality.

Now, the Academies are taking on the thorny issue of “long-haul” diseases, focusing specifically on long COVID, myalgic encephalomyelitis/chronic fatigue syndrome, persistent Lyme disease, and multiple sclerosis.

In June, NASEM will hold a workshop called “Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors.”

As LymeDisease.org CEO Lorraine Johnson points out, “these conditions are frequently neglected in research and medicine. As a result, patients who become profoundly ill are unable to receive treatment. This workshop brings together patients, clinicians, and researchers to build a collaborative effort among these communities to improve care.”

Johnson, Principal Investigator of the MyLymeData research project, is one of eight subject matter experts serving on the planning committee for the June event. Also on the panel is Dr. Brian Fallon, director of Columbia University’s Lyme & Tick-Borne Diseases Research Center. Click here to learn about other members of the group.

Research and knowledge gaps

According to the NASEM website, workshop discussions will consider the latest research and knowledge gaps in the following:

  1. Overlapping clinical and biological factors underlying infection-associated chronic illnesses.
  2. Current practice and novel technologies to develop urgently needed diagnostic tests for different stages of illness and/or the potential underlying infectious agent.
  3. Identification of therapeutic targets and strategies to prevent or impede chronic illness progression.
  4. Coordination and collaboration among various stakeholders and practitioners that will increase research and enhance care across different patient populations.

The two-day event will be held June 29 and 30 in Washington DC. You can also attend virtually. Click here for registration information.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

Category:

Activism, Lyme, research