When Lyme Patients Must Fight to be Believed by Doctors

September 23, 2024

https://www.lymedisease.org/lyme-patients-fight-to-be-believed/

When Lyme patients must fight to be believed by doctors

By Nancy Dougherty

Illness invalidation by medical professionals—sometimes called “gaslighting”—is an underappreciated and understudied problem in Lyme disease.

Many Lyme disease patients complain not only of fighting to recover their health but also of fighting to be believed by health care practitioners.

Expecting to receive understanding and proficient care from medical professionals, many instead experience having their persistent debilitating symptoms dismissed, minimized, disbelieved and/or psychologized.

How common is the occurrence of medical gaslighting in Lyme disease? Is illness invalidation by medical professionals related to disease severity? Are there specific constituencies who are being affected more than others?

These are some of the questions that a team of researchers led by Alison Rebman, MPH, Assistant Professor in Medicine and Director for Clinical and Epidemiological Research at the Johns Hopkins Lyme Disease Research Center at Johns Hopkins Medicine, set out to identify and quantify in a cohort of well-characterized Lyme disease patients.

Invalidating encounters

The Johns Hopkins study, published in August 2024 in Scientific Reports, finds that invalidating encounters with medical professionals are common for post-treatment Lyme disease (PTLD) patients, particularly women and younger patients, and also are linked to higher illness severity.

Lyme disease is the most common tick and vector-borne disease in the US with about 500,000 new cases per year. Lyme infections are expanding geographically, and acute and chronic cases are on the rise in the US and Eurasia. Lyme infection-associated chronic illness affects around 2 million Americans and can be difficult to properly diagnose and effectively treat.

A Lyme infection can affect multiple body systems including musculoskeletal, neurologic, and cardiovascular. Patients with early diagnosis and appropriate treatment usually get better. However, about 10-20% of patients even when treated promptly with standard of care antibiotics do not return to health and are functionally impaired by persistent musculoskeletal pain, crushing fatigue, and cognitive dysfunction, known in the research setting as post-treatment Lyme disease (PTLD).

Patients frequently refer to this as “chronic Lyme.” Misdiagnosis and delayed treatments further increase the risk for PTLD as well as for more broadly defined community-based Lyme infection-associated chronic illness or “chronic Lyme.”

Women and younger patients

In the Johns Hopkins study, 49% of the PTLD patients reported a lack of understanding and 29% experienced discounting from medical professionals. Additionally, women and younger patients were at higher risk for experiencing more invalidation than men or older age patients.

The study found, “Before their initial diagnosis of Lyme disease, approximately half (51.3%) had first been told that their symptoms represented another illness or condition. This high rate is consistent with the hypothesis that diagnosis and treatment delays, and possibly exposure to inappropriate treatment, may be risk factors for PTLD.”

Women more often received alternative diagnoses (such as another contested illness like fibromyalgia or ME/CFS and/or a psychological illness) which in turn correlated with more discounting and lack of understanding. PTLD patients who reported the highest levels of illness invalidation were discovered to have greater symptom severity, lower quality of life, and less trust in physicians.

The pervasiveness of Lyme disease illness invalidation and the consequential negative effects on illness burden and health outcomes are not broadly known by medical professionals.

Improved physician education is needed to help engender more patient-centered paradigms that incorporate the patient illness experience and better recognize how that experience may impact the healing process.

National Academies look at IACI

The National Academies of Sciences, Engineering and Medicine (NASEM) has helped validate infection- associated chronic illnesses as being significant public health problems that need greater national attention, a coordinated strategy, and considerably more federal resources.

NASEM held its first national workshop on infection-associated chronic illnesses (IACI) in June 2023 to explore overlapping symptoms and biologic pathways for IACIs including Lyme disease, long COVID, ME/CFS, MS, and others.

In July 2024, a follow-up NASEM meeting focused specifically on Lyme infection-associated chronic Illness. Both forums discussed the importance of listening to and incorporating patients’ illness experience perspectives into improving diagnostic and treatment approaches. For example, patient-driven data such as MyLymeData can be leveraged to improve research and clinical care. It is vital to listen to patients especially when diagnostics are problematic, treatments are inadequate, and the science is contested or evolving.

Building upon insights and collaborative momentum from the NASEM IACI meetings, a coalition of advocates (patient, scientific and medical) are now calling for the creation of a new National Institutes of Health (NIH) office to help strengthen and coordinate research across infection-associated chronic conditions and illnesses including Lyme infection-associated chronic illness, Long COVID, ME/CFS, PANS/PANDAS, POTS/dysautonomia and others.

Listening to patients will be key to advancing solutions, reducing invalidating patient-practitioner encounters, and improving health outcomes.

Nancy Dougherty is an education and communications consultant for the Johns Hopkins Lyme Disease Research Center. Other research investigations at the Center include Pilot Treatment Trials and the SLICE Studies.

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Researchers Say New Lyme Test Can Detect Lyme Within 14 Days of Infection

https://www.lymedisease.org/detecting-lyme-within-14-days/

Researchers say this test can detect Lyme within 14 days of infection

Focus on Lyme and Aces Diagnostics Inc. has announced a breakthrough in Lyme disease diagnosis with a new test that detects the disease at all stages, including the crucial first 14 days post-infection, with over 90% accuracy.

Aces Diagnostics is developing and manufacturing this test, aiming for FDA clearance to make it accessible to all patients.

LymeSeek™, developed through a collaboration between Tulane University and Focus on Lyme, combines advanced biomarker research from Tulane’s Monica Embers and nine years of intensive work funded by Focus on Lyme. Enhanced by machine learning, this innovative diagnostic promises to reshape Lyme disease detection.

“Previous tests have been less than 50% accurate, especially in the early stages,” said Tammy Crawford, CEO of Aces Diagnostics. “This has led to countless patients being misdiagnosed or undiagnosed, resulting in prolonged suffering. LymeSeek will change that, providing a reliable diagnostic tool that can save lives.”

Aces Diagnostics Team

The CDC reports that nearly 500,000 people in the U.S. are diagnosed with Lyme disease each year. Globally, 14.5% of the population is affected, with many suffering from chronic symptoms due to delayed diagnosis. A Johns Hopkins study revealed that 38% of Lyme patients continue to experience symptoms six months post-diagnosis, underscoring the need for improved testing.

Simplifying diagnosis

“Current Lyme testing involves multiple steps, with results taking over a week and requiring subjective interpretation,” said Aces Diagnostics Co-Founder Holly Ahern.

“LymeSeek™ will replace this cumbersome process, enabling earlier diagnosis and reducing chronic illness caused by delayed or missed diagnoses.”

Crawford and Ahern are personally invested in this mission, both having daughters who battled Lyme disease. “An early diagnosis could have spared them years of suffering,” said Crawford.

Aces Diagnostics Inc. brings together a team with over 50 years of combined experience in Lyme disease research, backed by a distinguished advisory board that includes experts from Johns Hopkins University, Columbia University, and Tulane University. The company is already advancing development and manufacturing efforts and pursuing early FDA clearance to make LymeSeek™ available to the public by the third quarter of 2026.

SOURCE: Focus on Lyme

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**Comment**

Testing has been and continues to be a major problem with Lyme/MSIDS for numerous reasons, one of the biggest being the fact many are coinfected with numerous pathogens that mainstream medicine and research never discuss.  These coinfected patients are some of the sickest but are kicked to the curb because testing doesn’t reveal what’s inside them.

While this new test is a step in the right direction, it still doesn’t address those who have been infected for decades or those who are coinfected.  It’s like comparing apples to oranges and until these issues are addressed, it remains a foreign language to mainstream medicine.

The Johns Hopkins study showing nearly 40% go on to suffer symptoms 6 months post-diagnosis is still low in my opinion due to the fact so many are never diagnosed in the first place and so many are infected with multiple things that are never picked up on testing.

But, one must remain hopeful……

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FREE Online Premiere of VAXXED III

https://vaxxed3.childrenshealthdefense.org/  REGISTER HERE

Miss the theater premiere for VAXXED III?

Do not fear – there is now a FREE online premiere

Date:  Friday, October 4, 2024

Time: 7 p.m. ET, 4 p.m. PT, 6 p.m. CT (Wisconsin)

Please join Children’s Health Defense Films for a FREE online premiere. In order to view the film, please sign up with your email address in advance.

We encourage you to share this event far and wide. As you know, CHD is 100% donor-funded. We still need to raise money for this film, but we have decided it’s critical to share this important documentary with the world and make sure this message reaches as many people as possible. If you would like to help support the film, you still can at the link below.

If you saw the film this week, you know that watching Vaxxed III on the big screen with a crowd was POWERFUL, so we encourage you to plan watch parties with your friends and loved ones, as well as invite new people who might benefit from watching this film.

Once you sign up, you will receive a follow-up email with a direct link to watch the virtual event on Oct 4.

In solidarity for transparency and health freedom,

The Children’s Health Defense Team

https://www.naturalnews.com/2024-09-13-vaxxed-3-exposes-injuries-deaths-vaccines-hospital-protocols

Upcoming VAXXED 3 documentary exposes widespread injuries and deaths caused by vaccines and hospital protocols

09/13/2024  Lance D Johnson

Article Excerpts:

This jarring documentary exposes widespread injuries and deaths caused by vaccines and hospital protocols that were mandated during the covid-19 scandal.

The documentary includes serious testimony from over a thousand interviews with everyday people, including medical professionals, whistleblowers and family members whose lives were shattered by the hospital protocols and mandatory vaccines.

The documentary is a culmination of testimonies gathered over a period of nine months, during which the Children’s Health Defense team traveled across the United States in a bus, documenting stories of vaccine injury, medical error and wrongful death.

“These were fundamental violations of human rights,” said Kim Mack Rosenberg, CHD general counsel. These human rights abuses led to medical atrocities at scale.  (See link for article)

The reality of widespread iatrogenic error and vaccine holocaust cannot be censored
  • Research is piling up to reveal that the mRNA vaccines increasingly weaken the immune system with each booster.  Multiple vaccinations causing a class switch in antibody production to an overproduction of IgG4, the antibody responsible for dampening immune response, and underproduction of IgG1 and IgG3, the antibodies responsible for cancer surveillance.
  • Now a ‘vaccine’ manufacturer is suing researchers for defamation and are demanding a retraction of a study describing adverse events after COVID injections.  Over 250 scientists, researchers, ethicists, doctors and patients have signed an open letter addressed to BBIL, ICMR and the editor at Drug Safety, demanding the lawsuit be withdrawn, and the study remain published.
  • Speaking of cancer, Amazon has excommunicated Dr. Paul Marik, another COVID dissident who led the charge for ivermectin and wrote Cancer Care: The Role of Repurposed Drugs and Metabolic Interventions in Treating Cancer.  Amazon has accused him of publishing titles with misleading content that have the potential to mislead or defraud our customers.
  • A chill wind passed through the dissident medical profession this week when Dr Sam White was permanently erased from the medical register for simply resigning his post and refusing to promote the clot shots.  It’s a clear message to other doctors considering speaking out.
  • And a chilling court case in Austria sounds like it could have come right out of a dystopian novel. An insane, vindictive prosecutor and a compliant judge convicted a 54-year-old Austrian woman with “grossly negligent homicide” for “fatally infecting her neighbor with COVID-19.” The Austrian prosecutors argued that the woman came in contact with her neighbor in a stairwell and shared viral DNA, before the neighbor got sick with COVID-19 and died of pneumonia.  This outrageous case sets a dangerous legal precedent, enshrining the germ theory as definitive legal doctrine, and making everyday activities subject to police state surveillance and prosecution. With this insane case, anyone with a damaged immune system can prosecute anyone they want, without serious evidence, for their own sicknesses and chronic diseases. Source:  https://lionessofjudah.substack.com/p/insane-covid-court-convicts-austrian

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A US Federal Agency’s Definitive Report on How Fluoride Harms Children’s Brains. What Now?

By Leo Cashman

9/19/24

Those who followed the multi-year fluoride trial saga know that the government’s much touted report on whether fluoride harms children’s brain has finally been released and seen the light of day. Getting it released at this late date wasn’t easy, as there seemed to be efforts to delay it and suppress it. It had been peer reviewed again, and reviewed again, to a farcical degree. 

Release of report halted 

Then, the report was finally completed and slated to be released in May of 2022. Its release was mysteriously halted, despite the fact that the judge in the fluoride trial was waiting for its release for more than a year, and it was supposedly needed in order to provide pivotal evidence in the trial after years of delay and waiting. Thanks to FOIA requests brought by the plaintiff’s attorneys, it was revealed that the release of the report had been secretly blocked by an order from someone high in the public health hierarchy: Admiral Levine, assistant Secretary of Health. The judge, exasperated, ordered that the preliminary version of the report be released to the court, so that its conclusions could be brought into evidence and the trial could be completed. This, on his part, allowed the final leg of the trial to be completed this past February; however, it is September, and we all are still awaiting a verdict. 

18 of 19 studies show impact on intelligence 

Now that we have the official National Toxicology Program (NTP) report, it is time to ask: what does it say? Are there any surprises to be found in it? In its description of the scientific details, the report did find confirmation, as expected, of fluoride as being toxic to children’s brains. Of the 19 highest quality studies, 18 of them found that higher levels of fluoride exposure were significantly associated with lower intelligence in children. But there were some statements in the report that will give the dental establishment something to cling to: the clearest evidence that fluoride is a brain neurotoxin was found at levels of 1.5 parts per million, which is higher than the 0.7 parts per million that the CDC now recommends for water fluoridation.

Multiplicity of factors add to fluoride exposure 

But a counter to that argument is that total fluoride intake – with some coming from food, toothpastes, drugs, and pollution – varies greatly, and susceptibility varies greatly too, with some people being harmed more easily than others. So, each side of the fluoride debate will still have talking points in the ongoing argument over fluoridation, and the big media will obviously favor the vested interests that make up the fluoride promoters. 

Fluoride in the food supply and pharmaceutical increase exposure 

Those who have followed the fluoride issue know how broad and powerful those players on the fluoride team are. Fluoride is found at much higher levels in many beverages and foods than it is in fluoridated water. So Big Ag and Big Food want the fluoride cover-up. Big Pharma knows that about ten per-cent of its drugs use fluorine as an ingredient, including Prozac and the notorious antibiotic, Cipro (They both carry FDA black box warnings). Heavy industry, from steel to coal, aluminum factories and phosphate fertilizer plants pose a hazard to workers and nearby communities alike.

ADA and media can’t admit they were wrong 

In particular, the phosphate fertilizer plants are capturing their hazardous fluoride fumes to keep them out of the environment and then have the gall to sell them to chemical companies who peddle them to city water works, which put the toxic waste into the water people drink – that’s what is called water fluoridation. So heavy industry does want to let go of the myths about fluoride being “safe and effective.” Big dentistry, as with the American Dental Association doesn’t want to admit that it was profoundly wrong over the last 80 years in insisting that every dental student in every dental school be taught that fluoride use and water fluoridation are fundamentally needed to assure children’s dental health. Big media itself has a stake in the debate, because it doesn’t want to admit that it was profoundly negligent in its coverage of the fluoride issue over the last 80 years.

Team Fluoride 

Instead of telling the public about what honest scientists had actually found, it has steadfastly held to the lies and the cover-up of the dental-industrial-governmental establishment when telling us what to believe. So, we shouldn’t expect the big players of Team Fluoride to admit that they have been in the wrong, and this will even be true regardless of what the verdict the trial judge in the fluoride lawsuit comes up with. If the defendant, the Environmental Protection Agency loses, it likely may very well appeal the verdict, thus allowing the harm to America’s children to continue on for months and maybe years. 
Expert fired; computers destroyed by “accident”? It has never been easy for the scientific truth about fluoride to see the light of day. The great toxicologist Phyllis Mullenix, PhD, seemed destined to turn the tide against the fluoride myths when she found powerful evidence in 1989-1990 that fluoride was toxic to her test animals. 
She had the integrity to publish anyway, despite warnings that she would lose her prestigious job at the Forsyth Dental Institute, if she did so. By 1994, she had been given a termination notice from Forsyth and in the final months of being there before she left, her multi-million high tech computer equipment had been destroyed, harmed by an inexplicable “rain” that had fallen from the ceiling. And the well cared for test animals had mysteriously taken ill and died. She never got another NIH grant or a job anywhere, in any university or research facility. In recalling her treatment by Forsyth and by the NIH research establishment, she described her experience as “Mister Toad’s Wild Ride.”  
Crops and farm animals severely harmed She had come to know first-hand how government and industry bias could trump science of the highest quality. But to her astonishment, it would rise to new heights in 1997, after several reporters contacted her and told her about of the real origins of water fluoridation, going back to the 1940s and the atomic bomb project (“The Manhattan Project”). DuPont’s chemical facility in Deepwater, Delaware, was facing a flurry of lawsuits from farmers who, being near the plant, had crops and farm animals that were severely harmed by toxic fluoride from the chemical plant. The plant was being used to make uranium hexafluoride, needed for Uranium isotope separation for the bomb project. It was Harold Hodge, PhD, the bomb project’s chief fluoride expert, who boldly proposed that the dental establishment should send around a memo to the communities in New Jersey claiming, falsely of course, that a little bit of fluoride in their drinking water would protect children’s teeth from decay. 

Harold Hodge, PhD

America’s biggest scientific fraudster? 

Hodge also brazenly green-washed the image of fluoride for industrial plants that were exposing their workers to unsafe amounts of fluoride. Hodge’s own research found that fluoride was harmful to the dentician of workers – most of them lost all of their teeth! – but Hodge falsified the evidence in a published scientific article that provided for the fluoride cover-up needs of American industry, including the bomb project which employed tens of thousands of workers, many of whom were disabled and many who died. In short, Harold Hodge, who died in 1990, known as America’s leading fluoride expert, was actually America’s biggest scientific fraudster and one who did incalculable harm to America in the sweep of time since then. Most people never learn that there is such a thing as a criminal-scientist. 
CIA and Department of Defense role? 

The revelations about the origins of fluoridation, Harold Hodge, and the bomb project particularly touched Phyllis Mullenix personally when she learned about them in 1997. For, the bizarre twist is that in the final years of Hodge’s life, he worked at Forsyth Dental Institute alongside Phyllis Mullenix as a sort of a fluoride research team helper. In a kindly way, he was always curious about her progress and what she was finding out. What she was finding out in 1989-1990, Harold Hodge had already secretly discovered half a century earlier in the 1940s, reported to all the players in government and the defense department but then lied about in his statements to the media and the public and in his published scientific papers. His role at Forsyth was, in all probability, to be a mole, to report the research findings to the CIA (which he had deep connections with) as well as the DOD and other government contacts. He was likely a spy for those who wanted to know the scientific truth but also to keep a lid on what the public would be allowed to know.

Expert asked not to publish findings 

So, with that, Phyllis more fully understood the depth of the fluoride cover-up. The powers that be wanted to know the truth about fluoride, including its harmful effects on the brain and behavior. But that was to better manage the use of fluoride and its impacts on brains and behavior, not to reverse course on a program that was harming American’s health. When they brazenly asked her not to publish her important results, they expected her to fall in line and keep quiet to protect her career as a scientist. 

Christopher Bryson

The Fluoride Deception 

This story and much more is covered in Christopher Bryson’s book The Fluoride Deception (2004). At 374 pages, and with thousands of scientific references and citations, this is the work of a brave world-class investigative journalist who covered the scientific excellence and bravery of the top scientific researchers of the last century. The book has chapters on Europe’s top fluoride researcher, Kaj Roholm. Back in the 1940s, Roholm was a brilliant and honest Danish researcher who, unlike Harold Hodge, told the truth on his continent publishing a 354-page book on it. But because of Roholm’s integrity, most of mainland Europe learned of the harmful effects of fluoride and never fluoridated its water. 

EPA “experts” ignorant of key research

In the closing hours of the epochal fluoride trial, EPA’s science expert, David Savitz was asked to comment on the work of Phyllis Mullenix and Kaj Roholm. But he claimed he knew nothing of them and had never heard of them. So, the works of Mullenix and Roholm never became part of the record in the fluoride trial because EPA ‘experts’ knew nothing about them.

Conclusion? What most people believe about fluoride is based on questionable science. That is the intended result of decades of media-government and ADA misinformation. That misinformation persists regardless of what Phyllis Mullenix or any other scientist has published. Old cover-ups die hard. There are powerful interests that want to keep them in place. Do not expect to be handed the truth on a silver platter by a governmental agency. If a governmental body imposes a heavy-handed health measure on you, it is good to be skeptical and to push back. 

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Shaken Baby Syndrome is Junk Science

September 20, 2024

https://theintercept.com/2024/09/09/texas-junk-science-shaken-baby-robert-roberson-execution/

Shaken Baby Syndrome Is Junk Science. Texas Plans to Be First to Execute Someone for It.

A decade after Texas passed landmark legislation to address flawed forensics, the courts have refused to apply it as intended.

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Article Excerpts:
….so-called shaken baby syndrome, or SBS: a diagnosis based on the belief that a certain combination of injuries found in a baby or toddler could only be caused by violent shaking. This theory has repeatedly been disproven by scientific research. Across the country, 34 people convicted based on SBS have been exonerated, according to the National Registry of Exonerations.

“The deadly consequences of this pattern are clear: People may be executed following convictions that rest on faulty science because they are unable to obtain relief,” reads the report. “This is especially concerning because the rate of wrongful convictions of death-sentenced people is quite high.”

Sween said she understands that people used to believe that shaken baby syndrome was rooted in science. But today, decades of research has revealed that’s not the case. Sween hopes the courts will finally see that.  (See link for article)

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**Comment**

While the article definitely focuses on the legal angle, I’m merely pointing out something every Lyme/MSIDs patient should be aware of: science is never settled and controversy abounds – particularly with tick-borne illness.

I’ve hear horror stories of parents of children with Lyme/MSIDS who were accused of child abuse or even Munchausen syndrome by proxy due to the medical controversy.

I would also like to point out a new area of medicine yielding “child abuse” doctors.  Families have often been torn apart and wrongly accused by these so-called experts.  This would be so easy to do with Lyme/MSIDS as it is already controversial and poorly understood.

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