Archive for the ‘Lyme’ Category

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:

Mayo Clinic: Same Lyme Disease Clap-Trap Just in Time For Summer

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/33704283?

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

Carl Tuttle
Hudson, NH, United States
Jul 14, 2025

What has been presented here in Tomorrow’s Cure is the same old dogma propagated for decades by those who have controlled this false public heath narrative.

Dr. Allen Steere would be doing us all a favor by retiring.

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “tomorrowscure@mayo.edu” <tomorrowscure@mayo.edu>
Cc: “newsbureau@mayo.edu” <newsbureau@mayo.edu>, “cwurzer@mpr.org” <cwurzer@mpr.org>, “asteere@mgh.harvard.edu” <asteere@mgh.harvard.edu>, “Pritt.bobbi@mayo.edu” <Pritt.bobbi@mayo.edu>
Date: 07/13/2025 3:00 PM EDT
Subject: Tomorrow’s Cure: New frontiers in Lyme disease detection — just in time for summer

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

Deb Balzer July 2, 2025
https://newsnetwork.mayoclinic.org/discussion/tomorrows-cure-new-frontiers-in-lyme-disease-detection-just-in-time-for-summer/

“Dr. Steere identified Lyme disease in 1976 while investigating a cluster of children in Lyme, Connecticut, who were experiencing unexplained arthritis. His research ultimately led to the discovery and naming of the disease. Since then, researchers have devoted their efforts to advancing diagnostic tools, treatments and vaccine development.”

Mayo Clinic “Tomorrow’s Cure” podcast
Attn: Cathy Wurzer, Host

Dear Cathy,

Thirty-five  years ago Dr. Allen Steere identified chronic Lyme disease which should have set off a red flag prompting an immediate search for better antimicrobials but then did a 180° as he became principal investigator (PI) of the Phase 3 clinical trial for the first Lyme disease vaccine. So all the eggs were put into the vaccine basket while a campaign was orchestrated to discredit the sick and disabled patient population along with the courageous clinicians attempting to help these patients. Apparently, a chronic relapsing seronegative disease did not fit the business model of patent royalties, vaccine development and pharmaceutical profits. That rush to create a Lyme vaccine early in the discovery phase (of the Lyme epidemic) eliminated the research desperately needed to find a cure for an infection that was not responding to antibiotic treatment as reported by Dr. Allen Steere in 1990 and the disabled Lyme community ever since.

Here is Dr. Steere’s 1990 publication summary for your review:

The New England Journal of Medicine 

Published November 22, 1990

Chronic neurologic manifestations of Lyme disease
https://www.nejm.org/doi/full/10.1056/NEJM199011223232102

This is what Steere was reporting in 1977:

Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three connecticut communities. (1977)
Steere AC, Malawista SE, Snydman DR, Shope RE, Andiman WA, Ross MR, Steele FM.
https://www.ncbi.nlm.nih.gov/pubmed/836338

Excerpt:

“The best treatment for this illness is not clear. Some physicians have reported that penicillin or tetracycline results in disappearance of the skin lesion (41,42), but others find antibiotics ineffective. Four of the patients with expanding skin lesions received penicillin but still developed arthritis.”

__________________________

In 1991 the Lyme disease organism, Borrelia burgdorferi, was grown from the cerebrospinal fluid of Lyme patient Vicki Logan at the Centers for Disease Control in Fort Collins, Colorado despite prior treatment with intravenous antibiotics. The patient died when the insurer refused additional IV antibiotics. Here is a copy of Logan’s CDC positive culture report for your review.

(Vicki Logan’s Chronic Lyme Autopsy results Page #1234567)

The destructive nature of Borrelia is evident in Vicky Logan’s liver (nutmeg liver), kidneys, heart, lungs and brain. The patient died after the insurer refused additional IV antibiotic therapy.

There are 700 peer-reviewed publications referencing persistent infection and in a 2018 study all patients were culture positive even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.

Quotes from the Tomorrow’s Cure podcast

Lyme disease testing:

Quote from Dr Pritt @ 15:11min into the podcast…

“…but later on, the antibody tests that we have are quite good at detecting those late-stage manifestations…”

1. Serology is so unreliable that in 2013 Virginia Governor Bob McDonnell signed HB1933 into law requiring healthcare providers to notify those tested that current laboratory testing can produce false negatives.

2. Governor Chris Sununu’s 2020-2021 commission to study diagnostic testing for Lyme disease  concluded that the FDA approved two-tier serologic immunoassay for Lyme was not reliable in all stages of disease; no better than a coin toss.
 
3. Peer-reviewed evidence of “Seronegativity in Lyme borreliosis and Other Spirochetal Infections” 16 September 2003  https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

4. 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.

Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837

Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d

aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA

Eur Neurol 1995; 35:113–117 (DOI:10.1159/000117104)

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.

Lyme disease vaccines:

Quotes from Dr Steere:

@ 26:41min: “I think we’ve had an effective and save vaccine for Lyme disease for over twenty years.”

@ 27:49 min: “From antivaccine movements the manufacturer decided it just was not worth the risk.”

This was not an “antivaccine movement” as there was substantial risk of serious harm to public health!

REPORT ON LYlMErix
Prepared by: SHELLER, LUDWIG & BADEY
Submitted to: VACCINES AN-D RELATED BIOLOGICAL PRODUSTS ADVISORY COMMITTEE   Jan 31, 2001

Excerpt:

The people who have contacted us were, prior to vaccination with LYMErix, healthy, active and energetic. Indeed, the very reason they sought the LYMErix vaccine was their desire to preserve their healthy, active lifestyle. However, what they experienced was a dramatic degradation of their health and quality of life. As will be described below, these previously healthy individuals are now afflicted with painful, at times debilitating arthritic symptoms, including joint pain and swelling, as well as extremely severe Lyme-disease-like symptoms which have persisted to this day.

LymeRix Vaccine Victim’s Stories and Related- Articles
https://www.dropbox.com/scl/fi/0jxjhg58v4zey5bl3s1xj/LYMErix-Vaccine-Victims-Stories-FDA-Jan-2001.pdf?rlkey=vmicwpln1e850otvtal0mw9y6&dl=0

JUDGEMENT, FINAL ORDER AND DECREE GRANTING FINAL APPROVAL OF THE CLASS ACTION SETTLEMENT:
https://www.lymedisease.org/wp-content/uploads/2018/05/2003-Vaccine-Judgement.pdf

What has been presented here in Tomorrow’s Cure is the same old dogma propagated for decades by those who have controlled this false public heath narrative.

Mark Twain once said, “It is easier to fool people than to convince them that they have been fooled.”

Has the wool been pulled over your eyes Cathy Wurzer?

Carl Tuttle
Independent Researcher
Hudson, NH
 
Letter to the editor published in BMJ June 10, 2020
Re: Lyme borreliosis: diagnosis and management
https://www.bmj.com/content/369/bmj.m1041/rr-1

Lyme Treatment Explained: Co-infections & Complex Cases

https://imahealth.substack.com/p/lyme-treatment-explained-co-infections

Lyme Treatment Explained: Co-infections and Complex Cases

IMA Senior Fellow Dr. Yusuf (JP) Saleeby hosts Part 3 in a series of Weekly Webinars on diagnosing and treating Lyme Disease.

Speakers: Dr. Yusuf (JP) Saleeby, Dr. Tom Moorcroft, Chris Jackman, FNP

Lyme disease is notoriously difficult to treat, but it’s even more complex than most realize. That’s because Lyme doesn’t always travel alone. Associated tick-borne co-infections like Bartonella and Babesia can mimic or mask Lyme symptoms, requiring different treatments to resolve. This reality turns Lyme treatment into a winding, uncertain road for patients and providers alike.

Luckily, we’ve enlisted some of the world’s top experts in Lyme and chronic disease to help demystify this debilitating condition. Join IMA Senior Fellow Dr. JP Saleeby as he hosts a practical conversation with Lyme specialist Dr. Tom Moorcroft and integrative nurse practitioner Chris Jackman. Together, they’ll break down what makes Lyme so persistent, how co-infections complicate recovery, and what successful treatment protocols can look like in the real world.

This is the third installment in IMA’s Lyme Disease series—an essential session for patients, practitioners, and anyone trying to make sense of this often-misunderstood chronic condition. Catch up with the previous episodes here:  (See link for article and video seminars)

More from IMA on Lyme:

Check out our ever-expanding Lyme Library for more:

_________________

For more:

One things for sure: a multi-drug combination is required for this.  Doctors who still prescribe ONE drug for this are hopelessly in the dark.  I would even add that ONE drug for an acute case isn’t enough and that tinidazole should be pulsed along with daily doxycycyline or minocycline until symptoms are completely gone.  I would also recommend blood ozone – the stronger the betterEBOO preferably.  If other coinfection symptoms arise – then the drugs that are effective for them should be layered in.  This is no joke, and the days of treating this passively are long gone.  Wake up doctors and do the right thing!

The Explosive Lyme Symptom That Can Destroy Relationships

https://www.lymedisease.org/lyme-rage-explosive-symptom/

Lyme rage: the explosive symptom that can destroy relationships

By Fred Diamond

6/17/25

We often focus on the physical symptoms of Lyme disease such as joint pain, neuropathy, and fatigue. But there’s another symptom that hides in the shadows, misunderstood even by some healthcare professionals: Lyme rage.

This intense, sometimes explosive emotional reaction can alienate friends, damage families, and leave survivors questioning who they are.

On this week’s episode of the Love, Hope, Lyme podcast, I spoke with Dr. Darin Ingels, a Lyme-literate naturopathic doctor, author of The Lyme Solution, and a Lyme survivor himself. We devoted the entire episode to Lyme rage—what it is, why it happens, and how to heal from it.

“These are typically people who aren’t angry people,” says Dr. Ingels. “They’ll tell me, ‘I’ve been a happy-go-lucky person,’ and now they’re having meltdowns over nothing.”

What is Lyme rage?

Lyme rage is not just general irritability. It’s a sudden, often uncharacteristic burst of anger or emotional volatility. Dr. Ingels explained that while it doesn’t affect every Lyme survivor, it’s common enough—and deeply disruptive.

“It’s this ability to flip the switch so quickly,” he says. “You go from fine to furious in a heartbeat. And it often doesn’t feel like you.”

Many people with Lyme report that these emotional outbursts damage relationships and lead to overwhelming feelings of guilt and shame.

“I don’t know that I experienced ‘rage’ per se,” Dr. Ingels says, “but I definitely had personality changes. I felt indifferent to life. I had meltdowns that felt like I was five years old.”

It’s these personality shifts—especially when they seem to come from nowhere—that serve as red flags.

What causes Lyme rage?

Dr. Ingels describes three core mechanisms behind Lyme rage, all of which involve inflammation in the brain:

  1. Direct Infection of the Brain:
    “We have postmortem studies showing Borrelia in and around brain tissue,” Dr. Ingels notes. The immune system’s response to the presence of these pathogens creates neuroinflammation that affects emotional regulation.
  2. Autoimmune Response:
    The immune system, to eliminate Borrelia or Bartonella, sometimes turns on the brain itself. “We start seeing antibodies that attack gray and white matter,” he says.
  3. Mast Cell Activation:
    Mast cells, typically associated with allergies, also play a role in Lyme. “They dump histamine and other chemicals around the brain, which leads to more inflammation and emotional instability.”

Many survivors describe Lyme rage as a complete departure from their typical personality. Some feel dissociated or emotionally numb. Others feel like they’re watching themselves explode and are powerless to stop it.

“Things that used to spark joy no longer do,” Dr. Ingels says. “You don’t want to go to dinner. You avoid friends. Even people who were very social become isolated. It’s overwhelming.”

He notes that these changes are often abrupt, especially in children or teens, where a diagnosis like PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) may apply. But adults can experience the same kind of inflammation-driven behavioral shifts, even if we don’t label it the same way.

“It’s almost like the effort to participate in life becomes too much,” he says.

Does Lyme rage build gradually or strike without warning?

“Some people feel it coming and can intervene,” he says. “But for many, it just hits like a lightning bolt. They’re fine, and then boom—they’re yelling, crying, or throwing things.”

When survivors do sense it building, Dr. Ingels suggests quick interventions that reduce inflammation—both pharmaceutical and herbal.

“Ibuprofen can help. Curcumin, Boswellia, Harpagophytum all have strong anti-inflammatory effects,” he said. “The key is to calm the inflammation in the brain.”

But for many with Lyme, the rage is sudden and uncontrollable, which means that long-term healing strategies become essential.

The long-term path to healing

How can survivors begin to heal from the neurological and emotional wreckage left by Lyme rage?

For Dr. Ingels, the answer lies in a combination of approaches:

  • Herbs and Botanicals:
    “I’m living proof that herbs work,” he says, recounting how Chinese herbal formulas from Dr. Zhang helped him feel 85% better after months of failed antibiotic treatments. “There’s a lot of power in plants.”
  • Immune System Support and Modulation:
    The goal isn’t just to kill the bug, but to restore balance to the immune system. “We have to clean up the mess Lyme leaves behind,” he said. “That includes food sensitivities, chemical sensitivities, and even environmental triggers like mold.”
  • Low Dose Immunotherapy (LDI):
    One of the most promising tools in Dr. Ingels’ clinic is LDI, which uses homeopathic dilutions of dead pathogens to retrain the immune system and reduce overreaction. “It’s like telling your immune system, ‘You don’t have to go to war anymore.’”
  • Oxygen and Energy-Based Therapies:
    For those who have access, hyperbaric oxygen therapy and PEMF (pulsed electromagnetic field therapy) can help calm brain inflammation without medication.

“Anything we can do to keep inflammation in the brain down will reduce the likelihood of those rage episodes.”

The emotional toll 

Lyme rage doesn’t just hurt the person who is ill. It often creates lasting pain within families and relationships. Many of the people listening to this podcast—and reading this article—carry guilt about the way they’ve lashed out at partners, children, or friends.

I ask Dr. Ingels what he would say to someone who’s struggling with that guilt.

“Have grace for yourself,” he says. “Much of this is reflexive. It’s not who you are. It’s something that’s happening to you because of the inflammation in your brain.”

He speaks candidly about how Lyme changed his own personality and may have contributed to the end of his marriage.

“I didn’t have the words at the time to explain what I was feeling. But I’ve since realized, this wasn’t really me—it was the disease.”

That recognition—while painful—is also liberating. It can offer survivors a starting point for healing, not just their bodies, but their sense of identity and self-worth.

What to tell Lyme patients who feel like giving up?

“You have to be your own best advocate,” he says. “The reality is, we are built to heal. Just because something hasn’t worked doesn’t mean there’s nothing out there that will. Keep going. This is your one life. Don’t give up.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version (pdf) of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.

_______________

**Comment**

So thankful this information is becoming available.

It’s the stuff patients have to share in support group because nobody believes them.

For more:

Lyme Disease Was Behind Her Seizures

https://danielcameronmd.com/lyme-disease-seizures-children/

Lyme disease was behind her seizures
Jul01

Lyme disease was behind her seizures

It’s one of the most emotional stories parents share.

They tell me their child was once full of energy and curiosity—but suddenly began struggling.

Fatigue, brain fog, dizzy spells, and even seizure-like episodes.

Brain scans? Normal. EEGs? Clear. Yet the worry remained.

“We were told they were functional seizures—just stress-related. No one believed our child was in pain.”

In more cases than you’d expect, Lyme disease or a tick-borne co-infection was the missing piece.


What Are Functional Seizures?

Functional seizures, also called psychogenic non-epileptic seizures (PNES), look like epileptic seizures on the outside—but don’t show abnormal electrical activity in the brain. They’re often thought to stem from psychological stress or trauma.

But here’s the issue:

Many children with tick-borne illness also have seizure-like episodes without abnormal brain scans or EEGs. And when they receive antibiotic treatment for Lyme disease, these episodes often improve or resolve.

So, the question becomes:

What if it wasn’t “just stress”? What if it was an infection affecting the nervous system?


What the Research Confirms

In a 1998 study led by Dr. Barbara J. Bloom, five children with Lyme disease were followed over time. Two of them had seizure-like episodes—but their EEGs and MRIs were normal. After receiving appropriate antibiotics, both improved.¹

A broader review by Dr. Brian A. Fallon and colleagues in the American Journal of Psychiatry found that Lyme disease can mimic seizures, anxiety, depression, and other neurologic disorders—even when imaging looks normal.²

These studies validate what many parents already sense: The symptoms are real. The child isn’t faking. And treatment can help.


How Lyme Affects the Brain

Lyme disease is caused by the bacterium Borrelia burgdorferi, which can invade the central nervous system—called neuroborreliosis.

In children, it may not look like arthritis. Instead, it may show up as:

    1. Seizure-like episodes
    2. Dizziness or fainting
    3. Brain fog and cognitive slowdown
    4. Mood changes
    5. Sensory sensitivities
    6. Trouble sleeping

When test results are “normal,” these symptoms can be misdiagnosed as:

    1. Anxiety or panic disorder
    2. ADHD
    3. Conversion disorder (functional neurologic disorder)

But Lyme and co-infections—like Babesia or Bartonella—can trigger these symptoms in ways that standard tests miss.


A Real-Life Story: Not Epilepsy, But Lyme

A 12-year-old patient of mine developed:

    1. Non-epileptic seizure-like episodes
    2. Dizziness
    3. Brain fog
    4. Light sensitivity
    5. Severe fatigue

Her brain MRI and EEG were normal. She was diagnosed with functional seizures.

But her mother remembered a camping trip. We tested her for tick-borne illness—results came back positive for Lyme disease and Babesia.

With the right treatment:

    1. The episodes stopped
    2. Her thinking cleared
    3. Her laughter returned

Her mother said, “She laughed like herself again.”


What Every Parent Should Know

  • If your child has unexplained seizure-like episodes, trust your instincts.
  • Lyme disease can trigger neurologic symptoms—even when scans are normal.
  • Don’t stop at “normal EEG” or “it’s just stress.” Ask about tick-borne testing.
  • Treatment for Lyme and co-infections has helped many children reclaim their health.

Key Research
  1. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC. Neurocognitive abnormalities in children after Lyme disease. Pediatr Infect Dis J. 1998;17(3):189–196.
  2. Fallon BA, Nields JA. Lyme neuroborreliosis: neurologic and psychiatric manifestations. Am J Psychiatry. 1994;151(11):1571–1583.