Archive for the ‘Lyme’ Category

The Ethical Cost of Dismissing PTLDS

https://danielcameronmd.com/ptlds-ethical-challengesptlds-ethical-challenges/

The Ethical Cost of Dismissing PTLDS

Posted By: Dr. Daniel Cameron
1/3/26

The ethical challenges of post-treatment Lyme disease syndrome (PTLDS) often begin at the moment symptoms persist after treatment. Patients may do everything right—receive a timely diagnosis, complete recommended antibiotics, and follow medical advice—yet continue to worsen.

This is not simply a clinical dilemma. It is an ethical one.

Why This Matters Clinically

These ethical challenges are not theoretical. They shape diagnostic decisions, treatment options, insurance coverage, and whether patients remain engaged in care or are quietly discharged when recovery does not follow expected timelines.

The Ethical Challenges of PTLDS Begin at the First Dismissal

A month after a confirmed Lyme disease diagnosis, she completed the standard 21-day course of doxycycline. Her bull’s-eye rash had faded. But the fatigue didn’t lift. The joint pain spread. She began forgetting names, appointments, even how to get home on familiar roads.

When she returned to her primary doctor, she was told the infection was gone. “This sounds like stress,” one physician said. Another suggested early menopause. A third offered an SSRI.

None mentioned post-treatment Lyme disease syndrome (PTLDS). None discussed the possibility of persistent infection. And none explored co-infections.

She wasn’t just dismissed. She was excluded from her own care.

Patient experiences of delayed recognition and dismissal after Lyme treatment are explored further in She Was Told To Wait. Then Told It Was PTLDS.

When Patients Lose Autonomy in PTLDS Care

One of the most overlooked PTLDS ethical challenges is the erosion of patient autonomy. This patient was not given the information necessary to participate meaningfully in decisions about her care. Without acknowledgment of ongoing symptoms or discussion of uncertainty, informed consent became impossible.

She was told she was fine—when she wasn’t. That silence didn’t just delay treatment. It stripped her of agency.

Nonmaleficence: The Harm of Being Dismissed

The ethical principle of nonmaleficence—to do no harm—can be violated not only through action, but through omission.

Over the next six months, she deteriorated. Her work performance suffered. Her relationships strained. She began to question her own perceptions and sanity.

Her harm did not come from over-treatment. It came from disbelief, inaction, and the refusal to consider alternatives when standard explanations failed.

Dismissing the possibility of persistent tick-borne infection does not protect patients. It compounds their suffering.

Diagnostic uncertainty and downstream harm caused by delayed or incomplete evaluation are examined in Problems with PTLDS Diagnosis.

Beneficence: Patients Deserve More Than Protocols

When she eventually came to my office, she brought a binder of labs, symptom charts, and denial letters. What she wanted was not reassurance—it was to be evaluated as a whole person.

We reviewed her history carefully, including tick exposure, prior antibiotic response, neurocognitive and autonomic symptoms, and co-infection risk such as Babesia and Bartonella.

Further evaluation revealed equivocal Babesia titers and autonomic testing consistent with POTS. Clinically, her presentation was consistent with persistent Lyme disease.

Her treatment plan addressed multiple dimensions, including antimicrobial therapy, antiparasitic treatment, POTS management, and cognitive and nutritional support.

Gradually, her symptoms improved. But nearly a year had passed before anyone looked beyond the protocol.

Beneficence requires doing what is best for the patient—not only what guidelines allow.

Clinical decision-making around individualized care after standard therapy is discussed in Intravenous Antibiotics and Post-Treatment Lyme Disease Syndrome (PTLDS).

Justice: Who Gets Believed, and Who Gets Left Behind?

The justice-related ethical challenges of PTLDS are “ethical consequences”.

This patient was denied insurance coverage for extended care, access to knowledgeable specialists, and disability benefits despite functional impairment. She was treated as a liability rather than a person in distress.

The skepticism surrounding PTLDS has created a two-tiered system: those who are believed and treated, and those who are dismissed.

Justice demands better.

The broader implications of contested terminology and access to care are addressed in Chronic Lyme vs PTLDS: The Debate.

Fidelity: The Ethical Duty to Stay With the Patient

Fidelity means remaining loyal to patients, even when answers are incomplete. For individuals with PTLDS, this often means acknowledging uncertainty, continuing evaluation, and refusing to abandon care simply because tests are normal.

This patient did not need false certainty. She needed someone to say, “I believe you. Let’s keep looking.”

That commitment alone can alter the course of chronic illness.

Disclosure and Ethical Uncertainty in PTLDS

An additional ethical concern arises when patients are not informed that the underlying cause of PTLDS remains debated. Immune dysregulation, neuroinflammation, autonomic dysfunction, and central sensitization are commonly discussed. Some clinicians also raise the possibility that persistent infection may contribute to symptoms in a subset of patients.

When this debate is omitted entirely, patients are denied a full understanding of their condition and the range of clinical perspectives that exist.

Patients deserve transparency. Silence is not ethical care.

A broader clinical overview of definitions, proposed mechanisms, and current understanding is discussed in What Is Post-Treatment Lyme Disease Syndrome (PTLDS)?

Ethical responsibility in Lyme disease care, including the role of clinical judgment when evidence is incomplete, is discussed in Ethical Lyme Disease Care: When Clinical Judgment Matters.

Conclusion: PTLDS Ethical Challenges Demand More Than Silence

This case is not rare. It reflects a growing population of patients harmed not only by illness, but by institutional neglect.

The ethical challenges of PTLDS require more than academic debate. They require action.

We must support autonomy through honest disclosure. We must avoid harm caused by disbelief, individualize care beyond rigid protocols, pursue justice in access to treatment, and remain with patients when answers are incomplete.

PTLDS is not a myth. Ignoring it is.

Clinician Mini-FAQ

Is discussing persistent infection ethical in PTLDS?
Yes. Ethical care requires disclosure of uncertainty and ongoing debate, even when mechanisms are not fully resolved.

Does acknowledging PTLDS mean abandoning evidence-based medicine?
No. It means applying evidence with humility, clinical judgment, and continued responsibility to the patient.

Selected References

Clinical Infectious Diseases Aucott JN, Rebman AW, Crowder LA, Kortte KB. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning 2013;57(2):333–340. Pubmed

Neurobiology of Disease Fallon BA, Levin ES, Schweitzer PJ, Hardesty D. Inflammation and central nervous system Lyme disease. 2010 Mar;37(3):534–541.. Pubmed

Infectious Disease Clinics of North America Marques A. Chronic Lyme disease: a review. Infect Dis Clin North Am. 2008;22(2):341–360. Pubmed

______________

**Comment**

This needed to be written.

It also exemplifies why RFK’s proclamation that the ‘gaslighting of Lyme patients is over,’ is vastly oversimplified.

The entire Lyme/MSIDS paradigm needs a ‘do over.’

Every single thing about it’s history is shrouded in bias and faulty or incomplete science.

Category:

Activism, Lyme, research, Uncategorized

Irish Woman Shines Light on Lyme Disease

https://www.ireland-live.ie/news/kilkenny-live/1976105/brave-local-woman-shines-a-light-on-cruel-disease-kilkenny-live-highlights-2025

Brave local woman shines a light on cruel disease – Kilkenny Live Highlights 2025

Ann Maher has been battling ill-health since 1995

By Liam Kelly O’Rourke

27 Dec 2025 

A brave woman living in Kilkenny for the past 50 years is fighting for more to be done in all areas of the political to raise greater awareness and treatments for Lyme disease.

Ann Maher has battled the horrific toll the cruel disease can have, battling severe side-effects over the past 29 years.

Despite the immeasurable personal challenges she has faced since her health first began to decline in 1995, the Kilkenny resident has proven to be a continuing vocal champion for those inflicted with the condition.

The little-known disease is a bacterial infection that can be spread to humans by infected ticks and is usually easier to treat if it’s diagnosed early. Many people with Lyme disease can be treated by antibiotics by their GP but some may experience long-lasting, life debilitating effects.  (See link for article)

______________

**Comment**

Yet another example of a chronically ill patient with Lyme/MSIDS.

Lyme/MSIDS, because Lyme is rarely alone.  Most patients are coinfected with numerous pathogens complicating their disease and requiring many different drugs.

It’s nerve racking that despite the thousands upon thousands of similar patient testimonials, chronic Lyme is hotly contested with public health ‘authorities’ and most doctors proclaiming that 10 days of doxycycline will ‘cure’ most people.

Nothing could be further from the truth.

This dear woman suffered with memory loss, stroke-like symptoms, extreme fatigue, and numerous hospital visits.

She went undiagnosed EIGHT long years, after being thrown from doctor to doctor like a football, before doing finally her own research which revealed the real story behind the madness.

I’ve heard this so many times I can simply tell you the script.

Research will lead the patient to discover that Lyme is hotly contested and that doctors are simply too afraid to diagnose and treat it, so they hide behind antiquated and unscientific CDC guidelines that denies chronic Lyme and prohibits extended treatment because they are beholden to insurance companies that don’t want to pay for it.

Enter the Lyme literate doctor, who for whatever reason took the time to actually study the issue for himself/herself, learned about ILADS, and became part of a group that educates doctors on the complexity of it and that the entire paradigm is simply wrong.

Then, at great expense, the patient had to travel to another country to get help.

After going through her own personal hell, she now advocates for others……

And this, is our story as well as thousands of others.

If you go to the top link there is a picture of the patient with the very typical lop-sided smile (Bell’s Palsy) indicative of and common manifestation of neurological Lyme. 

 

 

 

Category:

Activism, Lyme

Is Lyme Gaslighting Over?

https://medicaldetective.substack.com/p/is-the-gaslighting-of-lyme-disease-patients-a-medical-political-debacle-of-the-past?

Is the Gaslighting of Lyme Disease Patients a Medical-Political Debacle of the Past?

Richard Horowitz
Dec 31, 2025

HHS Secretary of Health RFK Jr. convened an HHS roundtable on Lyme disease this past week. The focus was improved diagnostics, treatment and insurance coverage, letting chronic Lyme sufferers know that the issue was more than just a public health crisis. It was also a personal issue for him and his family.  (See link for article)

_______________

Highlights:

  • Dr. Horowitz was one of the seven members of the HHS Tick-borne Disease Working Group (TBDWG) for six years, worked as co-chair of the HHS of Other Tick-borne infections and coinfections subcommittee where he convinced them to add Bartonella to the list of coinfections, whether transmitted by ticks or not, and then served on the HHS Babesia and Tick-borne Pathogens subcommittee several years later. He lists all the reports within the link.

Did 6 years of HHS subcommittees and all the hard work I and others put into these reports make any difference in the medical-political landscape? Absolutely not. ~ Dr. Richard Horowitz

So, you heard it straight from the horse’s mouth, folks.

Dr. Horowitz goes on to state:

  • Healthcare providers are still scared to diagnose and treat Lyme because state medical board are still attacking their licenses.
  • Globally, doctors are still uneducated and are confused about how to properly diagnose and treat chronic Lyme.
  • The CDC still denies that Lyme is a chronic infection, ignores published science, and still puts inaccurate information on their website.
  • Despite 10 Dapsone articles effectively treating chronic Lyme and associated coinfections, the CDC refuses to change.
  • The CDC refuses to post a validated HMQ Lyme questionnaire on their website which would help doctors clinically diagnose patients better and would include neuropsychiatric aspects which would help those with mental health issues and physical symptoms be better diagnosed.
  • It’s clear that the one germ, one disease, one drug paradigm does not work for Lyme/MSIDS and until that faulty assumption is dealt with, patients will continued to be kicked to the curb.
  • Horowitz states we are in an epidemic of Lyme and chronic illness and that real action must follow or it will be yet another HHS subcommittee and administration with ‘talk and no action.’

There’s a long and prolific history of ‘public health,’ infectious disease, and mainstream medicine gaslighting Lyme/MSIDS patients.  The entire paradigm requires an entire overhaul.

For more:

Category:

Activism, Lyme

2025: Pediatric Child Abuse Doctors Exposed

Sadly, many parents of children with Lyme/MSIDS have been through hell and back after being accused of child abuse or Munchausen Syndrome by Proxy due to the lack of education and understanding of this complex, life-altering illness. 

It’s now been proven that “shaken baby syndrome” is based on junk science, that children have been and continue to be medically kidnapped by the state in the middle of the night when police force their way into homes without a warrant due to a singular x-ray, and that many doctors are afraid to refer injured children for evaluations due to the tyranny of abuse specialists who often jump to the wrong conclusions, breaking up and destroying entire families.

Finally, some vindication……but more is needed

https://vaccineimpact.com/2025/2025-pediatric-child-abuse-doctors-exposed-for-medical-kidnapping-goes-mainstream/?

2025: Pediatric Child Abuse Doctors Exposed for Medical Kidnapping Goes Mainstream

by Brian Shilhavy
Editor, Health Impact News

Dec. 23, 2025

As we look back on a very troubled 2025, one of the few bright spots from the year is that many Child Abuse Pediatricians (CAP) were exposed for their roles in child medical kidnapping cases in the corporate media.

I am also happy to report that a couple of the most highly profiled CAP doctors are no longer practicing here at the end of 2025, due to media exposure and lawsuits from the parents of their victims who were wrongly removed from their families.

While these doctors should be behind bars for the families they destroyed, at least a couple of them now have resigned in disgrace and no longer have jobs as Child Abuse Pediatricians, a job with a single purpose, to find parents who allegedly abuse their children.

If they cannot find parents who abuse their children in their community, then the entire rationale and reason for them to collect their paychecks goes away.

And thank God, a couple of them now are no longer collecting paychecks to falsely accuse parents of abusing their children.  (See link for article)

________________

**Comment**

Unfortunately, one of these prominent CAP doctors made her harrowing mark right here in Wisconsin.  

Recently a federal lawsuit was filed against Dr. Nancy Harper by another pediatrician who served at the University of Minnesota for 17 years who accused the university of inflating child abuse diagnoses to secure lucrative grants by encouraging the manipulation of medical evidence that might have proved the innocence of parents.  

The accusing pediatrician was fired for stating the scheme was intended to maximize the identification and prosecution of child abuse cases to secure funding and increase the prestige of the university’s child abuse fellowship program.

This, my friends, is where ‘science’ has devolved to and it’s been going on for years.

Go here for a free ebook which is a compilation of over 5 years of research and publishing on MedicalKidnap.com, part of the Health Impact News network, covering the topic of Child Abuse Pediatricians, and their role in medical kidnapping. 

 

Category:

Activism, Lyme

After Decades of Dismissal, Chronic Lyme Disease is Now Recognized

https://www.theepochtimes.com/health/after-decades-of-dismissal-chronic-lyme-disease-is-now-getting-recognized

After Decades of Dismissal, Chronic Lyme Disease Is Now Recognized

Patients with persistent Lyme symptoms face medical limbo as federal officials and researchers debate causes, treatment, and what to call the condition.
Cara Michelle Miller
Updated:

“Like a human hockey puck”—that’s how Nikki Schultek describes a year spent ricocheting between specialists in Connecticut, each focused on one piece of her deteriorating health—bladder pain, neurological symptoms, joint pain—while missing the whole picture.

“I really don’t fault the clinicians,” she told The Epoch Times. “The training hones them to be experts in a domain.”

After her odyssey of misdiagnoses, Schultek finally received a correct diagnosis of Lyme disease. However, her experience navigating a fragmented health care system brought her to Washington on Dec. 15, where Health and Human Services Secretary Robert F. Kennedy Jr. convened a rare federal roundtable addressing what he called long-standing failures in how the disease is diagnosed, studied, and treated.

“Lyme disease is an example of a chronic disease that has long been dismissed, with patients receiving inadequate care,” Kennedy said at the event. “I want to announce that the gaslighting of Lyme patients is over.”

The Medical Divide

Schultek’s story echoes those of many patients whose months—or years—of fatigue, pain, neurological symptoms, and cognitive problems, after undergoing a battery of tests, are eventually traced back to that one tick bite that infected them with Lyme disease.

Persistent symptoms from Lyme disease are both difficult to diagnose and treat, in part because health agencies, mainstream medicine, researchers, and patients disagree about what is causing the debilitating constellation of symptoms.

The roundtable brought together patients, clinicians, researchers, and advocates to discuss what many describe as long-standing failures in how Lyme disease is diagnosed, studied, and treated. At stake is not just terminology, but access to care.
 
(See link for article)
_______________
 
**Comment**
 
Two things, right off the bat: 
 
  1. It’s going to take a whole lot more than an accurate test to fix this beast.
  2. A simple pronouncement from Kennedy is not going to stop the deeply entrenched gas-lighting of patients.
  3. I do blame doctors, public health, and institutions that ignore the Hippocratic Oath – a vow to ‘do no harm,’ and would rather turn patients away entirely or diagnose them with anything but Lyme/MSIDS, furthering their misery. 
The entire paradigm is set against patient health.  
The article falsely regurgitates that only 10% go on to suffer lingering symptoms, when microbiologist Holly Ahern puts it between 40-60% – a far cry from 10%. It also falsely states that 90% are successfully treated with a few weeks of antibiotics when research demonstrates again and again treatment failures in nearly every antibiotic study done.
 
The article doesn’t even sniff at coinfections. Reality paints a starkly different picture from what the article paints.  Most patients are sicker than dogs and infected with multiple pathogens which require entirely different drugs.  Nary a word on pleomorphism either (Bb’s ability to shapeshift and lie dormant to reemerge later).  
These issues are relevant as they make patients infinitely sicker and more complex.
Sorry – not feeling too excited about this.  Reading through the comments didn’t help either.  I saw plenty of the “if you are healthy you won’t get this,” and “take ivermectin,” or take Japanese knotweed.”  
 
If only it was that simple!

To comment, you are limited to 1500 words.  I left this comment:

Far more than 10% go onto suffer persisting symptoms because they don’t include those who are diagnosed and treated late – which is most of us: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/.

For a bird’s eye view of the entire sordid, complicated affair: https://madisonarealymesupportgroup.com/2020/09/25/why-should-we-care-about-lyme-disease-a-colorful-tale-of-government-conflicts-of-interest-probable-bioweaponization-and-pathogen-complexity/

How Lyme/MSIDS (multi systemic infectious disease syndrome – because Lyme is just the tip of the spear) has been handled is palpably insane. It’s going to take a whole lot more than an accurate test to fix this juggernaut. Doctors are afraid to diagnose let alone treat it: https://madisonarealymesupportgroup.com/2018/12/15/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients/

My husband and I only achieved our health back after FIVE years of intensely nuanced and expensive treatment and then retreating for a few months after relapsing 3-4 times.
Not sure I’d even be writing this if it weren’t for this life-saving treatment.
It’s sexually and congenitally transmitted.

All my initial symptoms were gynecological. Remember, it’s a cousin to syphilis: https://madisonarealymesupportgroup.com/2024/12/18/letter-breaking-down-timeline-deception-of-lyme-disease-no-studies-have-ruled-out-sexual-transmission/

_______________

If you have the time, comment after the article here:   https://www.theepochtimes.com/health/after-decades-of-dismissal-chronic-lyme-disease-is-now-getting-recognized-5960441?

 
 

Category:

Activism, Lyme, Testing, Ticks