Archive for the ‘Testing’ Category

Study Finds CDC Test Misses Most Cases of Early Lyme

https://www.lymedisease.org/lyme-biobank-study/

Lyme Biobank study finds CDC test misses most cases of early Lyme

BALF Lyme Biobank

July 11, 2025

A newly published study in Frontiers in Medicine reveals serious gaps in Lyme disease testing and post-treatment care, based on a decade of patient data collected by the Lyme Disease Biobank.

The research, supported by the Bay Area Lyme Foundation, followed 253 participants in Lyme-endemic areas of Long Island, New York, and Central Wisconsin between 2014 and 2023.

All presented signs of early Lyme disease, yet only 23% tested positive using the CDC’s recommended two-tiered test. Even among those with diagnostic Lyme rashes larger than five centimeters, just 34% tested positive.

The study also found that 21% of patients reported lingering symptoms—such as fatigue, joint pain, and muscle aches—three months after antibiotic treatment. Despite this, only 35% of those experiencing ongoing symptoms followed up with healthcare providers.

Early diagnosis is critical

“Accurate, timely detection of Lyme disease is critical to preventing long-term complications. Moreover, follow-up from medical professionals with all patients after they complete antibiotic treatment could  improve outcomes and reduce the burden of Lyme disease,” said lead author Liz Horn, PhD, MBI, Principal Investigator.

“Our data also confirm the limitations of serology testing in early Lyme disease and after antibiotic treatment.”

While the study does not address why only one-third (35%) of these participants followed up with their healthcare providers about their ongoing symptoms, barriers to care have been well documented in other studies.

Specifically, data from MyLymeData, the largest Lyme disease patient registry, documented barriers specific to patients with persistent Lyme disease, including lack of insurance coverage, healthcare costs, travel time and distance to obtain care, and availability of care.

Participants in this study provided samples to the Lyme Disease Biobank, which collects early and persistent Lyme disease patient samples, postmortem and surgical tissue, as well as controls.

“The Lyme Disease Biobank was visionary in recognizing early on that progress in research was dependent upon having a large number of well-characterized samples from patients with diverse manifestations of Lyme disease available for study,” said Linden Hu, MD, professor of Immunology at Tufts Medical School, who collaborates with Lyme Disease Biobank.

“Many research groups, including my own, have greatly benefited from Lyme Disease Biobank samples, and studies of this size and magnitude would not have been possible without its existence.”

______________

**Comment**

The CDC test misses most cases of ALL Lyme and is worthless.

For More:

Category:

Activism, Lyme, research, Testing

WSJ Says Chronic Lyme Was Once Dismissed But Doctors Are Coming Around – I Disagree

FILE_7701.pdf  Article Here

Chronic Lyme Disease Was Once Dismissed. More Doctors Are Coming Around.

Newer trials are starting to track Lyme patients and investigate potential treatments

By Brianna Abbott Jul 20, 2025

(See link above for article)

_____________

Why This Research Won’t Help Patients One Iota

By Alicia Cashman, Madison Lyme Support Group, Wisconsin

7/24/25

Summary of WSJ article:

  • A 63 year old Massachusetts woman was told in 2015 the root of her odd, flulike illness was likely Lyme disease.  (This website has hundreds if not thousands of such stories)
  • For the next decade she cycled through ‘unproven’ treatments and got push-back from doctors. (They must push the ‘not proven’ issue to keep us all from getting extended antibiotics which would make a majority of us better)
  • When MIT starting recruiting ‘people just like her,’ she felt validated.
  • The article then states ‘long COVID,’ is what is bringing chronic Lyme more credibility.
  • True to form and right on cue, long time player – Dr. John Aucott of Johns Hopkins, who has studied chronic Lyme for TWO decades but hasn’t budged the needle an inch, repeats the narrative that ‘long COVID’ has given chronic Lyme more ‘acceptance.’ (You must understand that there’s a lot of grant money for those who ignore the fact the COVID shots are likely behind ‘long COVID. It must also be stated that ‘long COVID’ looks exactly like other post-viral syndromes.) Vaccine injury gets ZERO grant money because our own government and researchers are beholden to Big Pharma. Vaccines are the cash cow of research.
    • The cat is let out of the bag on the final page of the article when it’s stated that the study includes acute Lyme and ‘long COVID’ participants.
      • First, notice that the reason we are hearing the clanging mantra of ‘long COVID’ is because it’s a part of the study. A lie can travel halfway around the world while the truth is putting on its shoes.
      • Second, notice that they are ONLY looking at ACUTE Lyme – something that’s been studied ad nauseam.  This research once again omits the sickest patients who never have any research done on them.
    • Thirdly, the cat continues to be let out when it’s stated they are looking for whether a molecule left behind could be driving inflammation.  Right there – they are admitting their bias that this is not a chronic, persistent infection that could be cured or benefitted with anti-microbial treatments.
  • The author is oblivious to the fact that Post-Treatment Lyme Disease Syndrome (prolonged symptoms for at least 6 months after treatment) doesn’t include a HUGE subset of patients who were diagnosed and treated late.  This continued regurgitated ignorance is allowing research to be skewed in favor of chronic Lyme only affecting 5-20% of patients – which is a much smaller deal than 40-60%, when those diagnosed and treated late are included.
  • The article repeats a falsehood: that in order to get Lyme one NEEDS to be bitten by a bacteria-carrying tick.  Congenital Lyme has been proven, and there is much to indicate  sexual transmition as well.
  • The reason they ignore anything but ticks is because then they can state their next falsehood, which fits the ‘climate change‘ narrative, which has been proven false by an independent tick researcher.
  • Third falsehood: a 2-4 week course of antibiotics cures the disease.
  • Fourth falsehood: blood tests can help determine if a person has antibodies against the pathogen. Seronegativity has been a big part of the Lyme debate from the beginning.
    • Part of the reason for this is the fact one of the most specific bands for Lyme was taken out of testing at the Dearborn, MI conference because it interfered with vaccine development.
    • Another reason is the fact that arbitrary levels of antibodies have been set, keeping a majority of those infected from ever testing positive.
    • Yet another reason is the fact that there has been a concerted suppression of microscopy  which is considered the gold standard for syphilis diagnostics. Similarly to the attacks on ivermectin and HCQ for COVID, ‘the powers that be’ continue to attack any test other than the CDC 2-tiered test for not being ‘FDA approved,’ even though the CDC test is not ‘approved’ either.
  • Fifth falsehood: there are no treatments that have been proven safe and effective after the initial antibiotics. My husband and I were in intense treatment for over 5 years using multiple antibiotics, among other things, simultaneously. Without this life-saving treatment I wouldn’t be writing this article today.
  • Proving that nobody’s coming around to accept Lyme Disease – read, “Gaslighting and Cults: Our Baffling Relationship With Tick-Borne Diseases,” written this past January, 2025.

This study won’t help chronically infected patients.  Don’t expect anything from this.  It’s the same crap, different day.  

For more:

Until we start OVER, and I mean from square one, research is all tainted and biased.  Don’t believe me?  Listen to Willy himself:

http://

Willy Burgforfer, Ph.D. Lyme Disease ‘Discoverer’

Category:

Activism, Lyme, Testing, Ticks, Transmission, Treatment, Uncategorized

A Masterclass on Tick-Borne Illness: Dr. Burrascano

http://  1 Hour 14 Min

Dr. Joe Burrascano: A Masterclass on Tick-Borne Illness

Jul 16, 2025
Bay Area Lyme Foundation
Dr. Joseph J. Burrascano Jr., a pioneer in the field of Lyme, began his practice in East Hampton, NY, in 1981, where he identified and detailed the clinical aspects of Lyme in a high-prevalence area. Renowned for his groundbreaking diagnostic and treatment guidelines since 1984, he has advised the CDC, NIH, and U.S. Senate, authored extensive publications, and is a founding member of ILADS, continuing to educate globally.
For more:

Category:

Lyme, Testing, Treatment

Expert Briefing on Ticks & Lyme Disease

http://

Expert Briefing on Ticks and Lyme Disease

May 29, 2025

Johns Hopkins Bloomberg School of Public Health experts Nicole Baumgarth and Thomas Hart discuss ticks and the growing threat of Lyme and other tickborne diseases.
Lyme disease is on the rise in the U.S., according to the CDC, mainly in the Northeast, Upper Midwest, and parts of the West. In 2023, state health departments reported more than 89,000 cases of Lyme disease in humans to the CDC, but the actual number of cases is likely much higher due to underreporting and misdiagnosis.
If left untreated, Lyme disease can lead to serious complications affecting the heart, joints, and nervous system. Other tickborne illnesses are also of concern, including Powassan virus and Heartland virus. There is currently no vaccine against tickborne illnesses.
Ticks Pose an Increasing Health Risk https://publichealth.jhu.edu/2025/tic…
Tickborne Diseases Are on the Rise—Here’s What To Know https://publichealth.jhu.edu/2023/lym…
Lyme and Tickborne Diseases Research and Education Institute video    • Lyme and Tickborne Diseases Research and E…  
Ticks Are Dangerous video    • Ticks Are Dangerous  
About Ticks and Tickborne Disease https://www.cdc.gov/ticks/about/index….
Lyme Disease Surveillance and Data https://www.cdc.gov/lyme/data-researc…
Lyme Disease https://www.cdc.gov/lyme/index.html
  • 00:00 Introduction
  • 01:40 What is Lyme disease
  • 04:12 Rates of Lyme disease
  • 9:10 Status of a vaccine
  • 10:30 Tracking infection rates
  • 11:25 Vaccine challenges
  • 13:30 Ubiquity of tick bites
  • 14:45 Diagnosing lesser known tickborne illnesses
  • 16:10 How to improve diagnosis
  • 19:00 Diagnosing illnesses
  • 20:10 This year’s tick season
  • 20:40 Symptoms of Lyme disease
  • 22:10 Other tickborne illnesses
  • 23:20 Dogs and ticks
  • 24:40 Ticks in the environment
  • 25:30 Preventing tick bites

_______________

**COMMENT**

Sadly, researchers continue to slice and dice this complex illness into a singular infection they call ‘Lyme disease,’ when truth be told, patients are often infected with numerous things working synergistically together, making the illness much more complex, harder to identify and treat, and much harder to overcome. So the very name, ‘Lyme disease,’ is inadequate for most patients.

I realize why they do this: due to their very specific work, they must omit variables to conduct research – at least within the current allopathic model of one drug and vaccine, for one disease.  Unfortunately, this is often not what we are dealing with at all in reality.

Category:

Lyme, research, Testing, Ticks, Transmission, vaccines

Mayo Lyme Disease Clap-Trap Part 3

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/33714016

Tomorrow’s Cure: New frontiers in Lyme disease detection — just in time for summer (Part 3)

Carl Tuttle
Hudson, NH, United States
Jul 17, 2025

Follow-up email to Dr. Allen Steere, guest speaker from the Mayo Clinic’s “Tomorrow’s Cure” podcast. (Please see part 1 and 2)

Steere’s picture was found here:

https://www.massgeneral.org/doctors/17513/allen-steere

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “asteere@mgh.harvard.edu” <asteere@mgh.harvard.edu>, “cathy@cathywurzer.com” <cathy@cathywurzer.com>, “d.balzer@mayoclinic.org” <d.balzer@mayoclinic.org>
Cc: “newsbureau@mayo.edu” <newsbureau@mayo.edu>, “cwurzer@mpr.org” <cwurzer@mpr.org>, “Pritt.bobbi@mayo.edu” <Pritt.bobbi@mayo.edu>, “tomorrowscure@mayo.edu” <tomorrowscure@mayo.edu>, “mayoclinicnewsnetwork@mayo.edu” <mayoclinicnewsnetwork@mayo.edu>, “genevieve@prx.org” <genevieve@prx.org>, “Secretary@HHS.gov” <Secretary@HHS.gov>, “pam.bondi@usdoj.gov” <pam.bondi@usdoj.gov>
Date: 07/17/2025 7:59 AM EDT
Subject: Re: Tomorrow’s Cure: New frontiers in Lyme disease detection — just in time for summer

Allen Steere, MD, Rheumatologist
Professor of Medicine, Harvard Medical School
Director of Translational Research in Rheumatology, Massachusetts General Hospital

Dr. Steere,

I would like to call attention to your quote below found on Mayo Clinic’s “Tomorrow’s Cure” podcast page:

“Lyme disease is challenging to detect given its ability to mimic other illnesses or appear asymptomatic altogether. “There may not be specific symptoms when the patient comes in that would tell them this is a vector-borne disease,” said Dr. Steere. “There may be symptoms that we commonly see with infection, or they may also be absent.”  Given this challenge, the development of better diagnostic tools is critical.”

As you know, serology cannot be used to gauge treatment failure or success which makes it the ideal tool for concealing a chronic infection. It sounds to me like serology was the perfect product to support the mantra, “chronic Lyme does not exist.”

It has been 50 years since you discovered Lyme disease in those cluster of children in Lyme, Connecticut and now you are finally admitting we need better tests??

Quote regarding CULTURE for Lyme disease @16:23 into the podcast…

“What we would really like is to have something that is truly associated with the infection itself and of course the best thing is to be able to identify the organism or at least some component of the organism by testing for this particular protein or the organism itself by culturing it which of course is the best way but very difficult to do in Lyme disease once late in the infection.” -Allen Steere

As previously reported, the CDC produced a positive culture in Lyme patient Viki Logan and from the 2018 Middelveen et al study Borrelia burgdorferi were cultured from the blood of seven subjects, from the genital secretions of ten subjects, and from a skin lesion of one subject. The cultures were subjected to corroborative microscopic, histopathological and molecular testing for Borrelia organisms in four independent laboratories in a blinded manner. Cultures from control subjects without Lyme disease were negative for Borrelia using these methods.

These examples are proof of chronic Lyme disease as culture is the gold standard for definitive diagnosis of bacterial and fungal infections worldwide but when it threatens the existing paradigm suddenly it becomes “not particularly useful.”

My Claim: A chronic relapsing seronegative disease does not fit the vaccine model so evidence of persistent infection (following the one-size-fits-all IDSA mandated treatment protocol) must be concealed/ignored at all costs.

Why is this proof of chronic Lyme disease despite extensive antibiotic treatment ignored Dr Steere?  Is the deliberate suppression of this evidence a crime?

A response to this inquiry is requested.

Carl Tuttle
Independent Researcher
Hudson, NH

Cc: Cathy Wurzer, Host

Deb Balzer Mayo Clinic Senior Communications Specialist

Robert F. Kennedy, Jr. Secretary of the U.S. Department of Health and Human Services

Pam Bondi, US Attorney General

_______________

For more:

Category:

Activism, Lyme, Testing, vaccines