Archive for February, 2021

Spring Warnings: Beware the Great Imitator

https://globallymealliance.org/the-great-imitator

Jan. 29, 2021

the-great-imitator

LYME DISEASE HAD BEEN MASQUERADING AS A LITANY OF OTHER HEALTH ISSUES FOR YEARS, UNTIL SLATER LAWRENCE FINALLY GOT WISE IN TIME TO TAKE BACK CONTROL.

by Slater Lawrence

Seemingly overnight, I had lost my balance and motor skills. Sensory processing became increasingly pronounced, where I could not recognize familiar faces, follow television narratives, or even identify known scents. I would suddenly become violently sick from eating any sugar. I could not focus. I became sensitive to light and sound, and my inability to retrieve words and form basic sentences was increasingly pronounced and disconcerting. After being misdiagnosed for years – from Multiple Sclerosis to Lou Gehrig’s Disease – a spinal tap revealed I had Lyme-induced encephalitis, or neuroborreliosis.

Lyme disease is one of the fastest-growing vector-borne infectious disease in the U.S., with an estimated 476,000 new cases each year, according to the Centers for Disease Control and Prevention (CDC). It is found in all 50 states, being most prevalent in the northeast – where it was first discovered – and has been spreading to the Great Lakes region with the warming climate. It has also been identified in 80 countries.

Lyme disease infects hosts with a spirochete bacterium called Borrelia burgdorferi and is transmitted by the blacklegged, or deer tick. Ticks travel on several hosts including deer, mice birds, and other small mammals. Contrary to popular belief, Lyme disease is not a seasonal concern, for ticks can live through the winter and have a three-year life span.

Following my Lyme diagnosis, I yearned for an answer to the long-coveted question: when was I infected? I fanatically combed through my medical records to no avail. I ultimately deemed my illness’ timeline corresponded with my time living on Nantucket, when I had the archetypal bulls-eye rash. Even though I did not develop more symptoms for months, one can present with no symptoms where, for example, 9-11% of New England’s population is asymptomatic.

As with syphilis in the 19th century, Lyme disease has been nicknamed the “great imitator” due to its vast ranging symptomatology, where its expressions in each individual can be vastly dissimilar and seemingly unassociated. While Lyme disease is commonly recognized for its physical symptoms, it can also cause mental and cognitive symptoms.

In addition to the foregoing neurologic symptoms, I had alarming “brain fog,” unparalleled confusion and memory loss that emulated dementia. Due to the inflammation predominantly in the left side of my brain, I had considerably reduced mobility on the right side of my body. Most vexing, however, was my arduous struggle to articulate and convey my thoughts.

Some quintessential physical symptoms others can experience include extreme fatigue, migrating joint pain and flu-like symptoms, while neurocognitive symptoms can range from concentration issues, slurred speech to facial paralysis. One emblematic characteristic, though, is the waxing and waning of symptoms.

What I didn’t know when I contracted Lyme disease years earlier was that diagnosing tick-borne illnesses are regrettably confounded by several variables.

I soon learned persistent, third-stage Lyme disease is a highly politicized disease that invokes an unflattering stigma. This is fundamentally due to the CDC and Infectious Disease Society of America (IDSA), the latter of whom writes the guidelines on treating Lyme, stipulating that Lyme disease is simply an autoimmune disease if symptoms persist following 28 days of oral antibiotics. Ties to insurance companies are rampant, while hopes for a vaccine hamper research for treatments and impedes federal funding.

Further frustrating matters, the textbook bulls-eye rash is only present with 50% of patients. Secondly, there are various species of Borrelia that can hinder accurate diagnoses, as commercial tests seldom detect more than two strains. In addition, Lyme is a “tissue tropic” disease; after the acute stages, it disseminates throughout the body, including organs, tissues and the brain, making it far more challenging to detect and eradicate. Lastly, biofilms – aggregated microorganisms with their slimy extracellular matrix – make it especially challenging for antibiotics to penetrate.

I found doctors ill-equipped to diagnose and treat severe cases of Lyme disease for not only the aforementioned reasons, but also due to the lack of training in medical school. In addition, many fear losing their medical licenses if they prescribe aggressive treatment due to politization that “chronic” Lyme disease is a construct. Moreover, treatment is often prescribed after a “CDC positive” two-tiered test, when the patient has a certain number of IgM and IgG antibodies. However, my weakened immune system could not generate an immune response, rendering standard Lyme tests futile.

This all notably retarded earnest discussions with my doctors, ultimately thwarting an accurate diagnosis for two years. I saw doctors from every specialty, where I was, quite deplorably, repeatedly dismissed as being depressed or that it was “all in my head.” This echoed in my psyche, where I became bewildered, at best, and overwhelmingly demoralized in my darkest days. In retrospect, I truly could not fathom the extraordinary disconnect between perceptions and the realities of Lyme disease.

While I know firsthand how difficult it is to grasp the profound effects of a small tick with Lyme disease, I cannot stress how essential it is to recognize the symptoms and how to prevent the disease from advancing.

Lyme disease stole my confidence due to consequential neurological deficits. It also took the one thing I cannot take back: time. Most importantly, however, Lyme has given me an invaluable attribute I will never lose and will always cherish: perspective. While the mental, cognitive, and professional ramifications can be devastating, tenacity, conviction and steadfastness can help to overcome Lyme disease.

_________________________________________________

Opinions expressed by contributors are their own.

Slater Lawrence is an investor in New York, New York. Contact: Slater.h.lawrence@gmail.com

_____________________

**Comment**

Great article and quite familiar in that I’ve heard the same story hundreds of times. The thing that really resounded with me was his statement about how doctors dismissing him echoed in his psyche and that he became bewildered and demoralized. This is so common, but must end. It is unacceptable that patients have had this same experience for over 40 years. Time for change.

The CDC has already bumped up the numbers again and admitted to 476,000 new cases per year (which is still too low). When will they admit this is a problem that needs serious action?

My only quibble is the statement that less than 50% see the rash. It can be far less than that, is highly variable, and should never be solely used to diagnose or for entrance criteria in research studies. The use of the rash has ignored thousands of the sickest patients who are kicked to the curb.

Category:

Lyme

The Myths of Lyme Disease: Separating Fact from Fiction for Military Personnel

https://ndupress.ndu.edu/Media/News/News-Article-View/Article/2498178/the-myths-of-lyme-disease-separating-fact-from-fiction-for-military-personnel/

By Dr. Montgomery McFate, Joint Force Quarterly

Feb. 16, 2021

Dr. Montgomery McFate is a Professor at the U.S. Naval War College.

Dolli Lane, 96th Medical Group laboratory technician, reviews sample through microscope November 19, 2015, at Eglin Air Force Base, Florida, after recently discovering rare spirally twisted bacteria, known to cause tickborne relapsing fever, and cultured by Centers for Disease Control (U.S. Air Force/Ilka Cole)

Dolli Lane, 96th Medical Group laboratory technician, reviews sample through microscope November 19, 2015, at Eglin Air Force Base, Florida, after recently discovering rare spirally twisted bacteria, known to cause tickborne relapsing fever, and cultured by Centers for Disease Control (U.S. Air Force/Ilka Cole)

I love everything in the world. Except for ticks.  —Dalai Lama

No one is immune to, and there is no cure for, tickborne diseases. Just one tick bite can destroy a person’s career. At age 43, Air Force Colonel Nicole Malachowski was found unfit for duty due to neurological damage resulting from a tickborne disease. Colonel Malachowski was the first woman to fly with the Thunderbirds and then commanded the 333rd Fighter Squadron. She also served as the deputy director for U.S. Air Force Readiness and Training in the Office of the Under Secretary of Defense for Personnel and Readiness and as the executive director of the White House “Joining Forces” Initiative (2015–2016).1 While she was commanding an F-15 fighter squadron, Colonel Malachowski began experiencing a rapid onset of multiple symptoms. She wrote that she suffered from intractable pain, insurmountable fatigue, cognitive dysfunction and major problems with my speech and short-term memory. I endured disorientation, confusion, anxiety and even moments of temporary paralysis. I was unsafe to be left alone. I could not play with my children, care for myself, or interact with my husband. . . . There were times I would have welcomed death. I thought I was tough as a combat-proven fighter pilot but tickborne illness destroyed me. It brought me to my knees and ruthlessly broke me.2

Servicemembers are particularly at risk for Lyme disease; they live, work, and play on bases where Lyme is rampant. Some 75 percent of all U.S. military installations are located in states where 99 percent of the approximately 500,000 tickborne disease cases reported to the Centers for Disease Control and Prevention (CDC) from 2004 to 2016 occurred.3 Moreover, training drills often take place in woods and fields that harbor a variety of tick species. In their leisure time, many Servicemembers and veterans, and their families, also enjoy hunting, fishing, camping, and hiking in the great outdoors, which increases their risk of encountering ticks.4 Lyme disease is most prevalent in rural counties with relatively high socioeconomic status, abundant forestation, wet conditions, and mid-range temperatures. These American counties tend to be exactly the sort of places where veterans like to retire, and indeed, “Lyme disease incidence rates were higher in counties with greater military veteran population compositions.”5 (See link for article)

______________________

**Comment**

Our military is in harm’s way and it isn’t from bullets.

For more:  

A few corrections & comments:
 
  1. Lyme disease has been around forever.  The first published case in 1970 actually happened right here in Wisconsin, but there were previous reports of ‘Montauk Knee’ and circular rashes that would clear up with penicillin. This early history is important to remember and share.
  2. Frankly, the jury’s still out on what is exactly causing “Lyme disease,” and there are far more strains of borrelia involved than is being recognized and reported. We also know many patients are coinfected or infected with something other than Lyme, that a Lyme test will not pick up in a million years.
  3. The CDC recently increased the numbers of new cases of Lyme per year from 300,000 to 476,000.  This too is important and reveals the numbers keep growing yet nothing of relevance is being done yet the mythology surrounding it abounds.
  4. It is my belief they continue to push the ‘climate change’ label as a slight of hand to keep people from asking about tick experimentation and dropping ticks out of airplanes.  This experimentation was done in government, military labs, one was directly across water from where the Lyme, Connecticut “outbreak” occurred.  Coincidence? The lab has been moved to KU.
  5. I take issue with “typical signs of infection” including the rash, as research has shown that is highly variable.  
  6. While I’m glad they give Dr. Spector’s experience, we really have ZERO idea how many cardiac manifestations occur as testing is abysmal and doctors would prefer to diagnose you with anything but Lyme.  I guarantee you, hundreds if not thousands of people with heart issues are not getting properly diagnosed and treated.
  7. The same thing is true for Lyme neuroborreliosis supposedly occurring in only 15% of patients.  Every single patient I work with has it.  Many are not being diagnosed.  Remember, testing misses 70% of all cases.  How can you be diagnosed with something if the test says you aren’t infected?  I am elated they mention the psychiatric symptoms, as well as the fact 33% of late-stage patients were found to be suicidal, 41% of children had suicidal thoughts, with 11% making suicidal gestures.  THIS IS HUGE.  These issues have been denied and downplayed forever.
  8. This article’s acknowledgment of congenital Lyme will shock many, but it’s all true.  Even the author connects the similarities between syphilis and Lyme – something our public ‘authorities’ seem incapable of.
  9. The article states that in more than 50% of cases, Lyme is not cured by a single round of antibiotics.  How can we continue to spew numbers when testing misses at least 70% of people?  My guess is, this number is reality is much, much higher.
  10. The article continues the wrong statistic of 20% failing antibiotics and going onto suffer persistent symptoms.  This article, written by a microbiologist states that percentage is closer to 60%, and certainly is much closer to my experience as a patient advocate.
  11. Lastly, the statement that Lyme/MSIDS is only lethal in rare cases again is unfounded as few are getting diagnosed and treated.  You can’t count something that isn’t recognized.  I posted an article recently that addresses the problems with death certificates.  I guarantee you people are not obtaining certificates with Lyme/MSIDS as the cause of death.
Overall, a very balanced article – which is a nice change.  We must be careful when putting percentages to any of this as the problem is far worse than is being reported.
The military is in harm’s way – but so is the average person gardening in their own back yard.  Tick-borne illness isn’t going away and has been denied and downplayed for decades.  
Again – time for this to change.
 
 
 

Category:

Activism, Lyme, Testing

Contact Your Representatives About the Vaccine Bill of Rights

Sample letter below the Bill of Rights

https://www.americasfrontlinedoctors.com/vaccine-bill-of-rights/

Los Angeles, CA – Today America’s Frontline Doctors (AFLDS) released the nonprofit, non-partisan organization’s latest medical-advocacy project, the COVID-19 Vaccine Bill of Rights (VBOR). The measure, presented as a memorializing resolution, can be passed by any of the 50 state legislatures and immediately adopted. The Vaccine Bill of Rights prohibits “vaccine passports,” “digital health IDs,” and other mandates currently supported by certain public as well as private entities. The VBOR lays out six provisions which provide a legal and ethical framework to protect patients who choose to opt out of the largest experimental vaccination program in US history. Read the draft legislation enacting the Vaccine Bill of Rights here.
 
The Vaccine Bill of Rights contains six general categories of protections for individuals against overweening government and attempted interventions by private businesses and organizations. AFLDS is encouraging lawmakers to adopt a minimum of four out of the six provisions contained in the VBOR, depending on the circumstances of their state and policy prerogatives. These provisions are:
  • No persons will be mandated, coerced, forced or pressured to take a COVID-19 vaccine.
  • No physician or nurse shall be asked by their employer to promote a COVID-19 vaccine.
  • All persons reserve the right, at all times, to determine what is in their own best medical interest without threat to their livelihood or freedom of movement.
  • All persons must be given access to independent information to help them determine what is in their own best medical interest, including the risk of death based upon age/condition from contracting COVID-19 naturally. This information must include information from sources that are independent of a conflict of interest such as a government, political or commercial entity. Such information can be included but cannot be the sole source of information.
  • The elderly are additionally entitled to a knowledgeable, independent advocate with medical training to help them determine their own medical interest.
  • Private businesses operating within the jurisdiction have no legal authority to require or mandate or coerce medication or experimental medication for any persons.
Said AFLDS, “Mandates, ‘passports’ or any effort to intimidate Americans into taking a vaccine for a virus with a 99.7% survival rate not only is damaging to individual liberty it also contradicts safe medical practice. Yet state governments, along with powerful private interests, are moving in the direction of requiring inoculations for large segments of our society as a condition to return to a ‘normal’ life. This is wrong. As part of the AFLDS commitment to science-based information exchange, transparency, and accountability, our organization developed this Vaccine Bill of Rights so that state legislatures can re-affirm their commitments to individual rights of conscience, assembly, and movement. America’s Frontline Doctors encourages our representatives to immediately pass this critical measure, direct public health officials to comply, and preserve the freedom of their constituents.”
 
The document will be distributed to legislative clerks as well as the majority and minority leadership of all 50 state legislatures. Read the entire COVID-19 Vaccine Bill of Rights here.
________________________
 
Go here to find your state senator and representative:  https://openstates.org/find_your_legislator/

SAMPLE LETTER

Dear Senator or Representative ________________,

As your constituent, I support a COVID-19 Vaccine Bill of Rights to protect myself from unconstitutional experimental vaccine mandates.

Please immediately sponsor and pass the COVID-19 Vaccine Bill of Rights memorializing resolution to re-affirm your commitment to individual rights of conscience, assembly, and movement. The Vaccine Bill of Rights contains six general categories of protections for individuals against government overreach and attempted interventions by private businesses and organizations. These are:

▪ No persons will be mandated, coerced, forced or pressured to take a COVID-19 vaccine.
▪ No physician or nurse shall be asked by their employer to promote a COVID-19 vaccine.
▪ All persons reserve the right, at all times, to determine what is in their own best medical interest without threat to their livelihood or freedom of movement.
▪ All persons must be given access to independent information to help them determine what is in their own best medical interest, including the risk of death based upon age/condition from contracting COVID-19 naturally. This information must include information from sources that are independent of a conflict of interest such as a government, political or commercial entity. Such information can be included but cannot be the sole source of information.
▪ The elderly are additionally entitled to a knowledgeable, independent advocate with medical training to help them determine their own medical interest.
▪ Private businesses operating within the jurisdiction have no legal authority to require or mandate or coerce medication or experimental medication for any persons.

As your constituent, my state representative’s commitment to individual liberty and medical ethics is very important to me. Intimidating Americans into taking a vaccine for a virus with a 99.7% survival rate not only is damaging to individual liberty, it also contradicts safe medical practice. I need to know where you stand. I urge you to sponsor the Vaccine Bill of Rights today and oppose unconstitutional and scientifically dubious COVID-19 vaccine mandates. 

Further, my husband and I have fought a 10 year battle against Lyme disease and the many coinfections that often come with it, helping hundreds of others obtain help.  All of us have compromised immune systems – and there’s a lot of us.  A prominent Lyme literate doctor in Wisconsin states that 80% of his autistic and PANS/PANDAS patients also struggle with tick-borne illness, further adding to this number of vulnerable people.  The last thing any of us need is a fast-tracked, experimental injection that doesn’t even fit the legal definition of a “vaccine,” or prevent infection or transmission.  
 
 

Sincerely, ____________________

____________________

To read more & see a video about the COVID injection:  https://www.americasfrontlinedoctors.com/vaccines/

To sign the petition to stop medical discrimination:  https://stopmedicaldiscrimination.org  and read the White Paper on the experimental COVID injection.

 

 

Category:

Activism, vaccines, Viruses

Sequelae in Adults at 6 Months After COVID-19 Infection

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776560

Research Letter
Infectious Diseases
February 19, 2021

Sequelae in Adults at 6 Months After COVID-19 Infection

Jennifer K. Logue, BS1; Nicholas M. Franko, BS1; Denise J. McCulloch, MD, MPH1; et alDylan McDonald, BA1; Ariana Magedson, BS1; Caitlin R. Wolf, BS1; Helen Y. Chu, MD, MPH1
Author Affiliations Article Information
JAMA Netw Open. 2021;4(2):e210830. doi:10.1001/jamanetworkopen.2021.0830
COVID-19 Resource Center
Introduction

Many individuals experience persistent symptoms and a decline in health-related quality of life (HRQoL) after coronavirus disease 2019 (COVID-19) illness.1 Existing studies have focused on hospitalized individuals 30 to 90 days after illness onset2–4and have reported symptoms up to 110 days after illness.3 Longer-term sequelae in outpatients have not been well characterized.

Methods

A longitudinal prospective cohort of adults with laboratory-confirmed severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection was enrolled at the University of Washington with a concurrent cohort of healthy patients in a control group (eAppendix in the Supplement). Electronic informed consent was obtained, and the study was approved by the University of Washington human participants institutional review board. This study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline. COVID-19 symptom data were obtained at the time of acute illness or retrospectively recounted at a 30-day enrollment visit. A total of 234 participants with COVID-19 were contacted between August and November 2020 to complete a single follow-up questionnaire between 3 and 9 months after illness onset. We did not perform statistical tests for this descriptive analysis because of the small numbers in each subgroup. Data analysis was conducted in R version 4.0.2 (R Project for Statistical Computing).

Results

A total of 177 of 234 participants (75.6%; mean [range] age, 48.0 [18-94] years; 101 [57.1%] women) with COVID-19 completed the survey. Overall:

  • 11 (6.2%) were asymptomatic
  • 150 (84.7%) were outpatients with mild illness
  • 16 (9.0%) had moderate or severe disease requiring hospitalization (Table).
  • Hypertension was the most common comorbidity (23 [13.0%]).

The follow-up survey was completed a median (range) of 169 (31-300) days after illness onset among participants with COVID-19 (Figure, A) and 87 (71-144) days after enrollment among 21 patients in the control group.

Among participants with COVID-19, persistent symptoms were reported by:

  • 17 of 64 patients (26.6%) aged 18 to 39 years
  • 25 of 83 patients (30.1%) aged 40 to 64 years
  • 13 of 30 patients (43.3%) aged 65 years and older
  • 49 of 150 outpatients (32.7%), 5 of 16 hospitalized patients (31.3%), and 1 of 21 healthy participants (4.8%) in the control group reported at least 1 persistent symptom.
  • Of 31 patients with hypertension or diabetes, 11 (35.5%) experienced ongoing symptoms.

The most common persistent symptoms were:

  • fatigue (24 of 177 patients [13.6%])
  • loss of sense of smell or taste (24 patients [13.6%]) (Figure, B)
  • 23 patients (13.0%) reported other symptoms, including brain fog (4 [2.3%])
  • A total of 51 outpatients and hospitalized patients (30.7%) reported worse HRQoL compared with baseline vs 4 healthy participants and asymptomatic patients (12.5%); 14 patients (7.9%) reported negative impacts on at least 1 activity of daily living (ADL), the most common being household chores.
Discussion

In this cohort of individuals with COVID-19 who were followed up for as long as 9 months after illness, approximately 30% reported persistent symptoms. A unique aspect of our cohort is the high proportion of outpatients with mild disease. Persistent symptoms were reported by one-third of outpatients in our study, consistent with a previously reported study,4 in which 36% of outpatients had not returned to baseline health by 14 to 21 days following infection. However, this has not been previously described 9 months after infection.

Consistent with existing literature, fatigue was the most commonly reported symptom.2–4 This occurred in 14% of individuals in this study, lower than the 53% to 71%2–4 reported in cohorts of hospitalized patients, likely reflecting the lower acuity of illness in our cohort. Furthermore, impairment in HRQoL has previously been reported among hospitalized patients who have recovered from COVID-19; we found 29% of outpatients reported worsened HRQoL.5

Notably, 14 participants, including 9 nonhospitalized individuals, reported negative impacts on ADLs after infection. With 57.8 million cases worldwide, even a small incidence of long-term debility could have enormous health and economic consequences.6

Study limitations include a small sample size, single study location, potential bias from self-reported symptoms during illness episode, and loss to follow-up of 57 participants. To our knowledge, this study presents the longest follow-up symptom assessment after COVID-19 infection. Our research indicates that the health consequences of COVID-19 extend far beyond acute infection, even among those who experience mild illness. Comprehensive long-term investigation will be necessary to fully understand the impact of this evolving viral pathogen.

Article Information

Accepted for Publication: January 16, 2021.

Published: February 19, 2021. doi:10.1001/jamanetworkopen.2021.0830

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Logue JK et al. JAMA Network Open.

Corresponding Author: Helen Y. Chu, MD, MPH, Division of Allergy and Infectious Diseases, Department of Medicine, University of Washington, 750 Republican St, Room E691, Seattle, WA 98109 (helenchu@uw.edu).

Author Contributions: Ms Logue and Dr Chu had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Mr Franko and Ms Logue contributed equally to this study and are joint first authors.

___________________

**Comment**

Please keep in mind that nearly 91% were asymptomatic or outpatients with mild illness!

I wish the same effort was being put into the 60% of Lyme/MSIDS patients that suffer with persistent symptoms which are far more severe than fatigue and loss of taste and smell.

Category:

research, Viruses

Tuttle’s Letter to the NH Lyme Disease Study Commission on the Limitations of Blood Testing

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

Limitations of Serological Diagnostic Tests

FEB 17, 2021 — 

I was appointed by Governor Chris Sununu to the NH Lyme Disease Study Commission as a result of HB490. 

Next Zoom meeting: Mar 26, 2021 09:00 AM Eastern Time

Our charter is 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.”

Website:

COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490

Here is a statement I read at the end of last Friday’s monthly Lyme Disease Study Group via the Zoom meeting.

Since the last meeting I have sent nine emails with topics to discuss in our meetings. The emails have contained many supporting references to my claim that serology is no better than a coin toss, harm caused by false negative Elisa tests reported to the NH Dept of Health ten years ago, comments from 340 NH residents with many reporting delayed diagnosis due to false negative serology and a list of references identifying seronegative disease.  A recent Johns Hopkins study reveals that if you’re not treated within the very narrow widow of 30 days, you run the risk of ending up with chronic Lyme disease [1] and yet humans won’t produce antibodies to the infection for 4-6 weeks after a tick bite. So, by the time serology is positive, if ever, it’s already too late as the spirochete responsible for Lyme disease were just recently identified in the brains of mice one week after infection. [2]

The possibility of missing a timely diagnosis is extremely high in a state with one of the highest rates of Lyme in the country especially in the absence of a bulls-eye rash. This was the case with all Tuttle family members. None of us developed the bulls eye rash, none of us met the strict CDC criteria for positive test results and as I mentioned previously, if we had not met Dr. Sam Donta, none of us would have been treated.

The sobering fact about this travesty is that it has been going on for over three decades and no matter how many complaints are submitted, nothing changes and lives continue to be ruined by an infection misclassified as a simple nuisance disease; “hard to catch and easily treated.” Everyone here is a single tick bite away from experiencing this health disaster as tick-borne disease infection rates in the ticks found in Litchfield for example are as high as 77% as indicated in the 2009 UMass tick study I sent to all of you yesterday. Of course, all these details are well hidden from the public. So I hope that we can make a difference here, get the truth out to the public and save lives that otherwise would have been upended by this life-altering/life threatening infection.

Ben Franklin once said, “Justice won’t be served until those unaffected are as outraged as those who are.”

Carl Tuttle
Hudson, NH
 
References
 
1. 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/

2. A murine model of lyme disease demonstrates that Borrelia burgdorferi colonizes the dura mater and induces inflammation in the central nervous system
https://journals.plos.org/plospathogens/article/authors?id=10.1371/journal.ppat.1009256

______________________________________________

Summary of emails “Topics for discussion at our next meeting”

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: wmarshmd@gmail.com (CHAIR)
Cc: All members of the Study Commission
Date: 02/08/2021 3:20 PM
Subject: Summary of emails “Topics for discussion at our next meeting”

To members of the Lyme Study Commission,

I have organized the emails I have sent since our last meeting so that these topics won’t be missed in the upcoming meeting(s)

Next Zoom Meeting: Friday Feb 12, 2021 9:00AM

Summary of emails “Topics for discussion at our next meeting”

#1 Dec 30, 2020

Presentation request

 -Amanda Elam, President and CEO of Galaxy Diagnostics has a 20min presentation for the Lyme Study Commission

–Galaxy Diagnostics Launches the Most Sensitive Test Available for Direct Detection of Lyme Disease ($295)
https://www.prnewswire.com/news-releases/galaxy-diagnostics-launches-the-most-sensitive-test-available-for-direct-detection-of-lyme-disease-301169364.html

“Galaxy validation data (unpublished) shows that the Nanotrap® Urine Test will often confirm active infection in patients with negative TTT (Two-Tiered Testing) results.”
 
#2 Jan 14, 2021

-2005 Johns Hopkins Study: Serology no better than a coin toss
-2016 Meta-analysis of test accuracy: Serology no better than a coin toss
-2020 Johns Hopkins study: Treatment Delays of 30 Days associated with chronic Lyme disease
-1998 Dennis Parenti’s vaccine presentation: Seronegative Lyme. At 36% is a common presentation

#3 Jan 15, 2021

-1995 Seronegative Chronic Relapsing Neuroborreliosis: The patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid
-2010 Registered Complaint to the NH Dept of Health: Identifying five NH cases where a FALSE negative Elisa led to patient harm (Willful neglect?)

#4 Jan 17, 2021

-Comments from 344 individuals living in New Hampshire: Individuals in bold lettering have been adversely affected by faulty/misleading Lyme disease testing
 
#5 Jan 20, 2021

-Not Using Ivermectin, One Year In, Is Unethical And Immoral: Used as an example of mismanagement of an epidemic as we have experienced with Lyme disease

#6 Jan 25, 2021

-Dr. Kenneth Liegner’s communication with public health officials at the CDC regarding patient harm to Jennifer Lilly from the faulty two-tiered serology test for Lyme disease.
-Includes many references to poor performance of serologic testing

#7 Jan 30, 2021

-Letter addressed to Rochelle Walensky, MD Director of the CDC: includes references to seronegative Lyme disease and evidence of persistent infection through culture performed by the Centers for Disease Control at Fort Collins, Colorado

#8 Feb 3, 2021

-PDF file identifying Seronegativity in Lyme borreliosis and Other Spirochetal Infections 16 September 2003: “If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.”

#9 Feb 5, 2021

-Study published this month identifying the spirochete responsible for Lyme disease in the brains of mice one week after infection. Lyme tests won’t be positive for 4-6 weeks after a tick bite (if you actually do produce antibodies) and you’ll miss the narrow window of opportunity for successful short-term treatment. Now you’ve gone past that thirty day mark that Johns Hopkins has recently identified as problematic as these patients end up with chronic Lyme disease. Serology is an inappropriate diagnostic tool for this life-altering/life-threatening infection.

Respectfully submitted,

Carl Tuttle
Hudson, NH

____________________

For more:

Category:

Activism, Lyme, Testing