Archive for the ‘Autism’ Category

It’s Time You Read the Truth About Dr. Andrew Wakefield

https://popularrationalism.substack.com/p/its-time-you-read-the-truth-about

It’s Time You Read the Truth About Dr. Andrew Wakefield

R-Calrizian’s Medium article written by Mary Holland deserves your time. Daily Mail’s Censorship of Dr. Ahmad Malik means you should share this on Social Media. Please Restack and Post everywhere.

JAMES LYONS-WEILER
JUL 24, 2023

Let the Daily Mail see the effect of their censorship. Share this post.

A Thorough Analysis of the Case Against Dr. Andrew Wakefield by Mary Holland, JD

Mary Holland (was) is a research scholar at NYU School of Law. She has written and edited books and articles on human rights and law. She has clerked for a federal judge, worked at the Lawyers Committee for Human Rights and at prominent U.S. law firms. She graduated from Harvard College and holds graduate degrees from Columbia University. She is a co-founder and board member of the Center for Personal Rights.

Introduction

If you’ve heard Dr. Wakefield’s name — and you probably have — you’ve heard two tales. You’ve heard that Dr. Wakefield is a charlatan, an unethical researcher, and a huckster who was “erased” from the British medical registry and whose 1998 article on autism and gastrointestinal disease was “retracted” by a leading medical journal. You’ve also heard a very different story, that Dr. Wakefield is a brilliant and courageous scientist, a compassionate physician beloved by his patients, and a champion for families with autism and vaccine injury. What’s the truth?

Who is Dr. Andrew Wakefield?

Dr. Wakefield graduated from St. Mary’s Hospital Medical School of the University of London in 1981; he was one in the fourth generation of his family to study medicine at that teaching hospital. He pursued a career in gastrointestinal surgery with a specialty in inflammatory bowel disease. He became a Fellow of the Royal College of Surgeons in 1985 and was accepted into the Royal College of Pathologists in 2001. He held academic positions at the Royal Free Hospital and has published over 140 original scientific articles, book chapters, and invited scientific commentaries.

Background on The Controversy

In the early 1990s, Dr. Wakefield began to study a possible link between the measles virus and bowel disease. He published a 1993 study, “Evidence of persistent measles virus infection in Crohn’s disease” and co-authored a 1995 article published in The Lancet, “Is measles vaccine a risk factor for inflammatory bowel disease?” At roughly the same time, Dr. Wakefield wrote an unpublished 250-page manuscript reviewing the available scientific literature on the safety of measles vaccines. He was rapidly emerging as one of the world’s experts on measles vaccination.

In 1996, an attorney, Solicitor Barr of the law firm Dawbarns, contacted Dr. Wakefield to ask if he would serve as an expert in a legal case on behalf of children injured by vaccines containing the measles virus. The lawyer was bringing the suit on behalf of parents who alleged that vaccines had caused their children’s disabilities, including autism. Six months before this, and independent of the litigation effort, parents of children with autism and severe gastrointestinal symptoms began contacting Dr. Wakefield because of his publications on the measles vaccine, asking for help for their children’s pain and suffering, which they believed was vaccine-induced. Dr. Wakefield made two major, but separate, decisions at about this time — to try to help the families dealing with autism and gastrointestinal problems, and to become an expert in the legal case regarding vaccines and autism.

Barr asked Dr. Wakefield to study two questions:

(1) whether measles could persist after measles infection or the receipt of the MMR vaccine; and

(2) whether the measles virus could lead to complications, such as Crohn’s disease or autism.

Due to bureaucratic delays at his hospital, however, Dr. Wakefield did not begin this litigation-related study until October 1997. By July 1997, Dr. Wakefield and his colleague, Professor John Walker-Smith, had already examined the “Lancet 12” — twelve patients with autism and gastrointestinal symptoms that were the basis for the case study in the 1998 article published in The Lancet. Dr. Wakefield and others had recommended the referral of these patients to Prof. Walker-Smith, an eminent physician described by his peers as one of the world’s leading pediatric gastroenterologists.

Prof. WalkerSmith had recently moved to St. Mary’s Hospital from a different institution and brought with him the same clinical privileges and ethical clearances that he enjoyed at his previous hospital. He, a colleague, Dr. Simon Murch, and a team of other physicians, did extensive clinical workups on these sick children that Prof. Walker-Smith deemed “clinically indicated,” while Dr. Wakefield coordinated a detailed research review of the tissues obtained at biopsy. The clinical tests included colonoscopies, MRI scans, and lumbar punctures to assess mitochondrial disorders. “Clinically indicated studies” did not require permissions from The Royal Free Hospital ethics committee because the tests were required for the benefit of the individual patients. Dr. Wakefield’s research was covered by an appropriate ethical approval.

In 1998, to announce the publication of The Lancet article coauthored by Dr. Wakefield and twelve other scientists, the dean of St. Mary’s Medical School called a press conference. While this was not standard practice, the dean presumably was seeking to enhance the school’s visibility in cutting-edge research. The article was labeled in the medical journal as an “early report,” stating that it “did not prove an association between measles, mumps and rubella vaccine and the syndrome described. Virological studies are underway that may help to resolve this issue.”

At the press conference, Dr. Wakefield was asked about the safety of the MMR vaccine. In 1992, two different combination MMR vaccines had been withdrawn from the U.K. marketplace because they were unsafe, so MMR vaccination was already a hot topic before The Lancet article was published. Dr. Wakefield responded that, given the paucity of combination MMR vaccine safety research, and until further safety studies were done, the vaccines should be separated into their component parts. He had previously informed his colleagues that this was his view and that he would express it if asked.

The 1998 press conference set off a media firestorm, with large numbers of parents raising uncomfortable questions about the safety of the “triple jab” and requesting single measles, mumps, and rubella vaccines. In the midst of the controversy, in August 1998, the British government took an extraordinary step. It made separate measles, mumps, and rubella vaccine components unavailable, thereby forcing the hand of concerned parents. At that point, measles vaccination rates among children in the United Kingdom fell significantly. Measles disease outbreaks became more prevalent and included a handful of cases of serious complications and deaths. Some sought to blame Dr. Wakefield for irresponsibly scaring parents and triggering a public health crisis. The British government had a big problem on its hands — one that would soon make its way to the United States.

The controversy surrounding Dr. Wakefield simmered. In February 2004, it reached a boiling point when Dr. Richard Horton, editor of The Lancet, held a news conference to declare that the 1998 article was “fatally flawed” because Dr. Wakefield had failed to disclose financial conflicts of interest with the litigation-related study he conducted. British reporter Brian Deer published the story in the Sunday Times, detailing alleged undisclosed conflicts of interest. Immediately following publication, Mr. Deer sent a detailed letter to the British General Medical Council (GMC), which regulates the practice of medicine. The GMC then initiated proceedings against Dr. Wakefield that culminated in Dr. Wakefield’s delicensure in May 2010 and the retraction of the 1998 article from The Lancet.

The Allegations against Dr. Wakefield

The highly publicized, multi-year, multi-million dollar prosecution against Dr. Wakefield alleged that:

•Dr. Wakefield was paid 55,000 British pound sterling (about US $90,000) by litigators for the study published in The Lancet, and he failed to disclose this conflict of interest;

•He and his colleagues performed medically unnecessary tests on the children in the 1998 study and lacked appropriate ethical clearances;

•The children in the 1998 study were selected for litigation purposes (as described in the Sunday Times article) and not referred by local physicians; and

•He drew blood from children at his son’s birthday party for control samples in the 1998 study with callous disregard for the distress that this might cause children.

Based on its findings, the GMC concluded that Dr. Wakefield had engaged in “serious professional misconduct,” and “dishonest,” “misleading,” and “irresponsible” behavior, warranting the sanction of his removal from the medical profession.

Let’s examine the GMC’s charges and the evidence.

Failure to Disclose Payment from Litigators

Dr. Wakefield accepted 55,000 pounds to conduct a study for the class action suit regarding vaccines and autism. This was a research grant from which Dr. Wakefield personally received no compensation. Dr. Wakefield did not start this study until after the case series for the Lancet 12 had been submitted. Legal documents prove that Dr. Wakefield’s hospital knew about this study and knew about the amount of money he received, most of which went to pay the salary of a designated laboratory technician. Documents further demonstrate that Dr. Wakefield disclosed in a national newspaper over one year before publication of the 1998 article that he was working with the litigators. Dr. Horton, editor of The Lancet, had been informed and should have been well aware of Dr. Wakefield’s role in the vaccine-related litigation before the publication of the 1998 article.

“Medical Necessity” and Ethical Clearances

The Lancet 12 were sick. Each child was administered tests with the intent to aid that child. The hospital administration was fully aware of the tests being conducted and made no objections. Because all of the tests were “clinically indicated” and not for research purposes, no ethical clearance beyond what Prof. Walker-Smith already possessed was required. Notably, no patient, parent, or guardian has ever made accusations against Dr. Wakefield or testified against him for ethical violations or medically unnecessary procedures. Dr. Wakefield and his colleagues reject the GMC’s ruling that the tests for the Lancet 12 were unnecessary.

The Lancet 12’s Referrals

The GMC charged that the children were referred through the litigation effort and not through ordinary medical channels. This is incorrect. Parents started contacting Dr. Wakefield long before the litigation started, and independently of it. Since the litigation study was not yet started by the time The Lancet study was completed and submitted to the journal, this finding is false. Dr. Wakefield and his colleagues reject that claim; the families contacted them directly because of their medical expertise.

Control blood samples from a child’s birthday party

Dr. Wakefield arranged for control blood samples from healthy, typically developing children to be taken at his son’s birthday party. Most of the children’s parents were medical colleagues and friends. He did this with the children’s and parents’ fully informed consent and gave the children 5 pounds each for their trouble. The procedure was undertaken by an appropriately qualified doctor using a standard technique. The children were happy to be helpful and went on to enjoy the birthday party. While this is admittedly an unconventional method of collecting control blood samples, it hardly amounts to “serious professional misconduct” or an ethical breach warranting delicensure. The GMC’s description of this incident as an example of “callous disregard” for children’s distress seems to be a gross exaggeration. Indeed, the U.K. High Court of Justice exonerated Professor Walker-Smith in March 2012, and the Lancet journal has suggested that it is considering reversing its retraction.

The GMC failed to prove its case against Dr. Wakefield. Using Brian Deer’s reporting as evidence, the GMC appears to have purposefully conflated the Lancet 12 study and the subsequent litigation study to create the appearance of a financial conflict of interest. Similarly, the GMC appears to have wrongfully applied ethical research standards to tests that were “clinically indicated” for severely ill children. Conflating treatment and research not only grievously harmed Dr. Wakefield and his colleagues but set a threatening precedent for the practice of medicine. The government’s medical regulators (of uncertain expertise) second-guessed Prof. Walker-Smith, the world’s preeminent authority on pediatric gastroenterology, on his clinical judgment about what tests were necessary.

Which medical decisions will regulators second-guess next? The press, and specifically reporter Brian Deer, tried Dr. Wakefield in the court of public opinion while the GMC was prosecuting him in its regulatory court. Deer alleged that Dr. Wakefield had a pending patent application for a separate measles vaccine and hoped to “cash in” by urging parents to forego the MMR for separate measles vaccines. The evidence proves that Dr. Wakefield was not a patent holder for a separate measles vaccine. St. Mary’s Hospital held a patent for a therapeutic single measles vaccine using the beneficial immune properties of transfer factor, intended for people already infected with the measles virus. This measles vaccine was not a preventive product for people unexposed to the virus; in other words, there was no possible financial competition between the MMR vaccine and the single measles vaccine for which the hospital, and not Dr. Wakefield, held a patent.

In 2009, Deer made additional allegations that Dr. Wakefield fabricated data. The GMC never made this charge, but the media picked it up and, notably, the U.S. Department of Justice used it frequently in the Omnibus Autism Proceeding in the U.S. Court of Federal Claims. In those proceedings to determine whether families could receive compensation for MMR-induced autism, the US Department of Justice went out of its way to depict Dr. Wakefield as a scientific fraud, although he was not directly relevant to the proceedings. In his 2010 book, Callous Disregard, Dr. Wakefield shows Deer’s allegations of fraud to be fabrications.

CPR finds no evidence of Dr. Wakefield’s scientific fraud. On the contrary, many scientists and laboratories around the world have confirmed Dr. Wakefield’s findings regarding severe gastrointestinal inflammation and symptoms in a high percentage of children with autism. In its February 2, 2010 retraction, The Lancet did not allege fraud. Relying solely on the GMC proceeding, it retracted the article, asserting that the authors had not referred the patients as represented and the study team had not received the hospital’s ethics committee’s approval. The GMC’s conclusions and The Lancet’s reliance on them appear unfounded.

The Meaning of The Wakefield Prosecution

What, then, was this high-profile prosecution really about? If there was no scientific fraud, no undisclosed financial conflicts of interest, no ethical breaches in performing tests on sick children, and no complaints from patients or their families, then what was the big deal? Did the international scandal and multi-million dollar prosecution proceed merely to chastise a doctor for drawing blood from children at a birthday party, with their consent and their parents’ consent? Of course not.

Dr. Wakefield was, and remains, a dissident from medical orthodoxy. The medical establishment subjected him to a modern-day medical show trial for his dissent. Dr. Wakefield’s research raised fundamental doubts about the safety of vaccines and the etiology of autism. Dr. Wakefield was punished for his temerity to caution the public about vaccine risks and to urge them to use their own judgment. Dr. Wakefield was punished for upholding vaccination choice.

The purpose of the proceeding, as in any show trial, was to communicate to other doctors and scientists, and to the public, the error of the perpetrator’s ways. A show trial offers a veneer of due process but, at its core, displays naked power. The apparent intent of the prosecution was to intimidate others from following Dr. Wakefield’s footsteps and to teach the lesson that anyone in the medical or scientific community who dares to publicly question the safety and efficacy of vaccines will be punished with utmost severity. The GMC appears to have decided that if the price of such a lesson was scientific ignorance about vaccine-autism links and the suffering of severely ill children, then so be it. Dr. Wakefield was made an example.

The GMC destroyed Dr. Wakefield’s professional reputation and livelihood, and The Lancet and other publications confiscated his professional accomplishment through retraction. The GMC colluded with The Lancet, the media, the British Department of Health, the pharmaceutical industry, and even with the U.S. Department of Health and Human Services and the U.S. Department of Justice, to discredit Dr. Wakefield. The Center for Personal Rights is confident that the world will look back at the prosecution of Dr. Wakefield, Walker-Smith, and Murch with shame and remorse.

In due course, the world has paid tribute to human rights dissidents, as well — Nelson Mandela moved from prison in South Africa under apartheid to become its most beloved President; Andrei Sakharov left Russia’s internal exile to become its moral beacon; Vaclav Havel left a Czech prison to become its first post-communist President; and Liu Xiabo, a Chinese human rights advocate, received the 2010 Nobel Peace Prize in absentia because he remains incarcerated. In time, China will embrace Mr. Liu and look to him to help create a better future. Before long, the world will likely recognize that it was Dr. Wakefield, not his detractors, who stood up for the practice of medicine and the pursuit of science. Dr. Wakefield remains an unbowed dissident in the face of a repressive medical and scientific establishment.

Dr. Andrew Wakefield

Original Source: A Thorough Analysis of the Case Against Dr. Andrew Wakefield by Mary Holland, JD

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Activism, Autism, vaccines

Case Report: Substantial Improvement of Autism in Child By Using Treatment For Vector Borne Infections

https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1205545/full

Case report: Substantial improvement of autism spectrum disorder in a child with learning disabilities in conjunction with treatment for poly-microbial vector borne infections

CASE REPORT article

Front. Psychiatry, 18 August 2023
Sec. Autism
Volume 14 – 2023 | https://doi.org/10.3389/fpsyt.2023.1205545
Amy Offutt1* Edward B. Breitschwerdt2
  • 1Heart and Soul Integrative Health, Marble Falls, TX, United States
  • 2Intracellular Pathogens Research Laboratory, Department of Clinical Sciences, and the Comparative Medicine Institute, College of Veterinary Medicine, North Carolina State University, Raleigh, NC, United States

Poly-microbial vector-borne infections may have contributed to neuropsychiatric symptoms in a boy diagnosed with autism spectrum disorder. Targeted antimicrobial treatment resulted in substantial improvement in cognitive (such as learning disabilities, focus, concentration) and neurobehavioral (such as oppositional, defiant, anti-social, disordered mood, immaturity, tics) symptoms.

Conclusion

This teenage boy had a drastic improvement in his neuropsychiatric symptoms and in his academic standing, moving from special education services with accommodations to grade level academic standing without accommodations, to college acceptance. Progressive symptomatic improvement occurred only following targeted administration of antimicrobial agents directed at suspected, underlying, chronic infectious pathogens, namely the causative agents of bartonellosis and borreliosis. Further research is clearly needed to define if or the extent to which occult infections can contribute to neuropsychiatric illness, such as ASD.

(See link for full article)

_________________

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Autism, Bartonella, Lyme, Psychological Aspects, research, Treatment, Uncategorized

When Treating Bartonella Clears Symptoms of Autism, What Next?

https://www.lymedisease.org/when-treating-bartonella-clears-autism/

When treating Bartonella clears symptoms of autism, what next?

By Debbie Kimberg

March 14, 2023

My 16-year-old autistic son’s learning disabilities suddenly resolved after treatment for congenital Bartonella and Lyme infections. (See: After 80% improvement in autism symptoms, he’s going to college.) This turn of events totally shocked our family and left us scrambling to figure out our next steps.

Before beginning treatment for Bartonella, Sammy had a tutor named Annie. This sweet, patient young woman came weekly to our home to help him organize his work and make sure he turned it in.

A few months after starting treatment, Sammy began resisting Annie’s assistance. He’d routinely exclaim, “Mom, I don’t need her help! I’m doing fine by myself!”

At first, I thought his angry behaviors were resurfacing. But then I paid closer attention to his grades and realized that he was right. My son, who had suffered with learning differences and ADHD, could suddenly do his schoolwork with no support from anyone else.

Not only did his ADHD resolve, but his grades in his core classes moved from Cs to As. What a baffling and exciting time for our family!

Learning new words

Concurrently, Sammy began asking me the meaning of all kinds of words. They were words that you would expect a 16-year-old to know, such as tremor, simmer, and immature. With Sammy’s new desire to broaden his vocabulary, we played a word game, though we never called it that.

I deliberately began to speak using larger, more advanced words, coyly embedding the meaning into the sentence to ensure he understood it. Interestingly, he was quick to try to incorporate that same word into conversation to showcase his mastery. He was a sponge! Sammy smiled proudly when he spoke, as he skillfully used a new word in a conversation.

Our vocabulary game reminded me of Forrest Gump running from the school bullies who chased him and how the braces fell off Forrest’s legs and onto the dirt road. It was as if a similar shackle on Sammy’s brain had inhibited his learning. Once it was removed, his ability to learn was remarkable.

Nurturing a new stage in learning

Before, our job as parents had involved helping him get his high school technical diploma (targeted to special education students). Now, we needed to help him catch up on all of the learning he had clearly missed due to this disease and the brain inflammation it caused. Our hope was for him to earn a full high school diploma.

This was uncharted territory.

We believed that a private school would be better equipped to handle his new, unique learning needs. But how could I even begin to explain to a school administrator what had happened, and Sammy’s unusual learning needs?

Although I thought it would be a strange conversation to have, I expected that admissions officers would be supportive and want to work with us. Instead, school after school turned us away, even ones whose mission was to support children with learning differences. Sammy’s diagnosis of autism and his previous IQ and psychological testing didn’t meet the schools’ minimum requirements.

I grew more frustrated as every school that we pursued turned us away. I was at a loss for how to help him.

Then I had an epiphany! A different and potentially better path was needed.

Changing educational gears

Since Sammy was doing well in high school, no longer requiring special education classes and wanting to attend a four-year university, we changed gears. Now, we set our sights on what he needed to learn to take his ACT and be accepted to college. We hoped to leapfrog Sammy to a new level.

This decision turned out to be a great one. A highly regarded college-testing prep school heard what had happened and were eager to help. The owner took an immediate interest in our story and moved Sammy to the top of their long wait list.

Sammy’s ACT tutor was a perfect fit – smart, fun, compassionate—and he loved singing too. Typically, a student would receive private college test prep tutoring for 2-3 months. Sammy received weekly tutoring for 10 months. With the help of this amazing school and its staff, Sammy did well enough on his ACT to gain admission to his first choice of colleges.

The future: rehabilitation from autism

I hope one day that many other families will face the same dilemma of helping their child recover from autism symptoms. With proper screening and treatment for vector-borne infections, our education system will need to redefine its services for these children.

New school programs will be required to help recovering children, a type of rehabilitation, if you will. Much like someone might need intensive occupational therapy to learn to walk again after a car accident, those recovering from autism and brain inflammation will need rehabilitation as well.

Imagine if our country could move away from Applied Behavioral Analysis therapy (ABA – designed to increase social abilities like completing tasks, communicating, and learning new skills). Currently, demand for this therapy is so high that young children must often wait years to learn basic language, coping and hygiene skills. Instead, we could enter a new era in which our children are taught to catch up in their schooling and how to refine more advanced social skills.

Therapists would need to develop new programs and be specially trained to help our recovering autistic children become the adults they were meant to be.

And of course, with proper screening and treatment prior to, or in worst case, during pregnancy, hopefully the rates of autism will see a steady decline.

I look forward to this day with great anticipation. I believe it’s not a matter of if, but a matter of when.

What’s needed

There are important steps needed to make this dream a reality:

1) CDC recognition of this important medical cause of autism symptoms,

2) development of effective diagnostic testing and an extensive, flexible set of criteria for a doctor to make a clinical diagnosis of tick-borne diseases,

3) development of effective, reliable and fast-acting treatments for tick-borne diseases.

We need to call on the CDC and government to treat autism as the public health emergency it is. We must screen the 7 million cases of autism to identify those who’ve been impacted by Bartonella and Lyme-related infections. The CDC needs to work more aggressively, beyond the genetic research, to follow the path of a potential infectious cause of symptoms. Bartonella should be at the top of the list.

And of course, infected parents and siblings would need to be screened and treated too.

I say all of this with much love and acceptance to all on the autism spectrum. To our autistic teens and adults, we accept and appreciate who you are. It is okay to acknowledge that you may be sick through no fault of your own. And it’s okay to get treated, so you feel better. It could change your life.

To find a doctor to screen your child for tick-borne diseases, see LymeDisease.org’s Physician Directory or your state’s Lyme Facebook group.

Debbie Kimberg can be contacted through her website.  You can follow her son’s wellness journey on Instagram and TikTok at @hijackedbrains.

Disclaimer: The author is not a doctor. This article is the opinion of the author and is not intended to dispense medical advice. Please seek a doctor’s advice for diagnosis and treatment.

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Category:

Autism, Bartonella, Lyme

Update on Young Man With Autism/Bartonella/Lyme

I love stories like these.  This is an update from this earlier post.

https://www.lymedisease.org/80-percent-improvement-autism/

After 80% improvement in autism symptoms, he’s going to college

By Debbie Kimberg

Sammy, my 18 year old, autistic son, showed an 80% improvement in autism symptoms after being diagnosed with and treated for Bartonella, Babesia, and Lyme–all included under Pediatric Acute Neuropsychiatric Syndrome or PANS.

You can find more details in my previous blog: Treating Bartonella Cleared Most of My Son’s Symptoms of Autism. 

An amazing event happened during the holidays last month. Sammy was accepted to a four-year university! This would have been unthinkable two years ago when we expected him to go directly on disability after high school.

My husband and I are incredibly grateful to our doctors, this community, and proud of all the hard work Sammy put in to catch up on learning he missed throughout his schooling. I hope you’ll enjoy this short video about his college acceptance! Instagram, TikTok, YouTube (optimized for mobile).

Looking back on our journey, one of the frustrations that I experienced was how long it took to get the correct diagnosis and treatment.

The search for root causes

When a child develops psychiatric symptoms, it can be hard to find a physician who will explore underlying medical causes such as infections. Instead, doctors are more likely to prescribe a litany of psychiatric medications.

Additionally, even if you have a doctor who is familiar with infectious causes of neuropsychiatric symptoms, it can be extremely difficult to figure out which infections in particular are the source of the problem.

For example, if your child tests positive for strep antibodies, a provider might give a diagnosis of PANS, Pediatric Autoimmune Neuropsychiatric Syndrome. But strep may not be the whole story. If you dig deeper, other infections such as Bartonella and Lyme disease may be causing the immune system to malfunction.

PANS specialists often limit their focus to common childhood infections such as strep, Epstein-Barr virus, mycoplasma pneumonia, HHV-6, cytomegalovirus and coxsackie virus.

Failing to recognize the role of Lyme and other vector-borne diseases may lead to many failed treatments, lost years of childhood, and unnecessary medical expenses.

Vector-borne diseases

For years, we worked with doctors who missed the true underlying cause of my son’s PANS symptoms by focusing primarily on strep and coxsackie infections, due to false negative vector-borne diseases (VBD) test results.

VBDs include Bartonella, Borrelia (Lyme disease), Babesia, Ehrlichia, Anaplasma, and tick-borne relapsing fever, among others. In addition to ticks, Bartonella can be transmitted by the scratch of a cat or other animal, as well as by lice, mites, bed bugs, fleas, and spiders (1). The combination of infections is often referred to as VBDs.

A PANS focus on the simple infections tested by common labs led to many failed treatments and an additional seven lost years for my son.

Unfortunately, many lab tests can give false negative test results for VBDs. That’s when it’s essential to have a knowledgeable practitioner who can give a clinical diagnosis — based on signs, symptoms and medical history.

It wasn’t until we received a clinical diagnosis for Bartonella, Babesia, and Lyme and found effective treatments, that we made true progress. With proper treatment for VBDs, my son’s strep and coxsackie virus titers returned to normal and appeared to cause no symptoms.

Dr. Amy Offutt, the president-elect of ILADS, said,“High antibodies to infections such as strep, EBV, HHV-6 and coxsackie virus can ebb and flow over time, depending on severity of symptoms, and can simply be a sign of immune dysregulation.”

What you should know

1. Congenital Bartonella and other vector-borne diseases can cause PANS symptoms. Bartonella, in particular, can cause many of the neuropsychiatric symptoms associated with PANS (2). For us, Bartonella was the most important, but not the only culprit of this story.

2. VBDs are often difficult to pick up on testing, even from specialty labs. According to Dr. Offutt, “The combination of patient and family history, clinical presentation, high suspicion, and lab results must all be considered in determining a clinical diagnosis.” The more children in a family who have symptoms, the more important it is to be screened for VBDs, as well as mycotoxin/mold illness.

3. Frequently, but not always, children with VBDs have chronic illness, and not necessarily an acute presentation. Often children with chronic illness display symptoms by age four. In some adolescents, in particular girls, neuropsychiatric symptoms may not develop until late teens or early twenties (3).

Children may present with chronic symptoms such as headaches, ADHD, autism, tics, learning differences, motor delays, or sensory sensitivity prior to a final insult (i.e. illness, major stressor, or other challenge to the immune system) that can cause a sudden escalation in symptoms.

In other cases, the child has no PANS symptoms prior to an insult to the immune system which brings on an acute onset of neuropsychiatric and physical symptoms. There are reports of acute PANS cases beginning after COVID (4,5) that have been determined to be caused by a latent Bartonella infection becoming active for the first time.

Similarly, it may be possible that other infections such as strep, flu, and EBV may also cause Bartonella and other VBD activation, though research is needed to better understand this. Dr. Offutt advises that “All children suffering with neuropsychiatric issues, whether acute or chronic, should be evaluated for the possibility of a chronic vector-borne disease.”

4. Frequently, children with VBDs also have high antibodies for infections associated with more traditional PANS, such as strep, mycoplasma pneumonia, EBV, HHV-6, cytomegalovirus, influenza, and coxsackie virus. Additionally, these children may also test positive for autoimmune encephalitis, high cytokines, high interleukins, and have positive Cunningham panels. (This is a blood test which measures the levels of circulating autoantibodies associated with certain neurologic and psychiatric symptoms.)

Per Dr. Offutt, “Because high antibodies may actually be a sign of immune dysregulation, treatment for Bartonella, Babesia, Borrelia, and other vector-borne infections, if present, may resolve the immune dysfunction and should be a top priority to treat.”

Moreover, it is critical to note that treatments for VBD are different from treatments for simple PANS infections. To clear chronic VBDs, specific, complex, targeted treatments are required. If treatment for simple PANS infections prove unsuccessful, VBDs should be evaluated and clinically diagnosed, if appropriate.

VBD symptoms in children

Note: the majority of psychiatric symptoms can be caused by Bartonella. In fact, Dr. Edward Breitschwerdt, Dr. Tania Dempsey, and Dr. Daniel Kinderlehrer all have noted in their writing and webinars that Bartonella is a cause of PANS (6,7,8,9).

B – Indicates symptoms caused by Bartonella

B+ – Indicates Bartonella symptoms that may have overlapping symptoms with other VBDs

X – Vector-borne infections other than Bartonella

Symptoms Vector-borne Disease
ADHD B+
Autism Spectrum Disorder (ASD) B+
OCD B+
Oppositional Defiant Disorder (ODD) B+
Anxiety, social anxiety, separation anxiety B+
Depression B+
Antisocial B+
Mood swings/bipolar B+
Panic attacks B+
Explosive temper/irritability B+
Mood swings B+
Fears B+
Emotional lability B+
Psychosis B+
Hallucinations B+
Suicidal ideation B+
Violence B
Learning disability, low reading comprehension B
Brain fog, memory issues B+
Vocal and movement tics B
Baby talk, age regression B
Anorexia/eating disorders B+
Bedwetting/urinary issues B+
Picky eating X
Dilated eyes X
Dysgraphia X
Dyslexia X
Night terrors X
Remitting fever B+
Rashes B+
POTS B+
Digestion issues (i.e Reflux, pain) B+
Constipation or Diarrhea X
Histamine issues/Mast Cell Activation Syndrome (MCAS) B+
Seizures B

But my child wasn’t bitten by a tick or other vector?

Most people infected with VBDs do not recall a tick or insect bite. Additionally, infections can be transmitted congenitally to the child during pregnancy, often by a mother who didn’t know she was infected (10). There are a wide variety of mild to moderate symptoms of VBDs beyond chronic fatigue and pain that get little attention.

To learn more about congenital transmission and symptoms in parents, please read Do Lyme symptoms in mothers lead to ASD? for a discussion on this topic. Note: this article applies to all parents whose children have a PANS diagnosis.

What are the similarities and differences in treatment?

Treatments for strep, EBV, and other non-VBD PANS infections often involve azithromycin, augmentin, amoxicillin, or minocycline. Since these antibiotics are commonly used to treat VBDs in combination with other antibiotics, they may help a patient see some improvement in symptoms.

However, these drugs generally only treat cellular or intracellular infections. Treating VBDs require addressing all forms of the infection: cellular, intracellular, and importantly, biofilm-contained pathogens in order to see long-lasting results. Furthermore, if a child is infected with a parasitic infection such as Babesia, antimalarial drugs may be required.

Without a full understanding of what you are treating, you may experience temporary improvements, but the vector-borne infections may continue to grow and wreak havoc for the patient.

What do I do if my child isn’t improving?

I read posts on the PANDAS/PANS Facebook groups every week. Many moms are frustrated with their children’s lack of progress. They try to crowdsource advice on neuropsychiatric medications and better supplements because their children have flared or aren’t responding to treatments after years of trying. Some children are in dire straits with psychosis, severe oppositional behavior, OCD, suicidal thoughts, or aggression.

Sometimes the child has a VBD diagnosis, but the doctor missed the clinical diagnosis of Bartonella or other infections if the testing was negative. Other times, the child has the correct diagnosis including Bartonella, but is only receiving single antibiotics to treat strep and other simple infections.

In this case, the doctors are not following protocols for the targeted treatment of Bartonella and other VBDs, which may be the primary infections.

And, many other times, the child sees a traditional PANS doctor who missed the most important factors causing their patient’s neuropsychiatric symptoms.

We need all of our PANS doctors to treat VBDs

If you are a doctor who treats PANS infections without considering VBDs, as a parent who suffered through failed treatments, wasted tens of thousands of dollars, and lost years of my son’s life, I recommend two options.

1. Get trained on the full range of infections associated with VBDs, or

2. Be willing to refer PANS patients to providers who know how to screen for and treat VBDs.

We need more doctors who know how to properly diagnose and treat this complex condition!

It’s time to put the focus on Bartonella and VBDs

So many families struggle to make sense of the tests and do their best to follow the complicated treatments. To build consistency in how the disease is diagnosed and treated, doctors should provide a specific, clear, and accurate diagnosis of the primary infections.

A VBD diagnosis should not be muddled with umbrella terms like PANS. It’s time to abandon the term PANS for describing VBD and get serious about the Bartonella, Babesia, Lyme, and related infections that are stealing our children’s lives.

If your child needs an evaluation for VBD, you can find a Lyme specialist on LymeDisease.org or in your state’s Lyme Facebook groups.

If you are a doctor who wants to become a Lyme specialist or to stay abreast of the latest developments in diagnostics and treatment, contact the International Lyme and Associated Disease Society (ILADS) for educational opportunities.

The author can be contacted at debbiekimberg.com. You can follow her son’s wellness journey on Instagram and TikTok at @hijackedbrains.

References

1 Human Bartonellosis: An Underappreciated Public Health Problem?, Mercedes A. Cheslock and Monica E. Embers
2 Recovery from Lyme Disease: An Integrative Medicine Guide to Diagnosing and Treating Tick-borne Illness by Dr. Daniel A. Kinderlehrer, pages 66-77, 122-124, 131-134, 138
3 Jane Marke, MD: Tick-borne disease, Lyme, and Psychiatric Illness
4 Psychology Today: What can Lyme Disease Teach Us About Long-haul COVID, Dr. Daniel A. Kinderlehrer
5 Long COVID or Post-acute Sequelae of COVID-19 (PASC) – An Overview of Biological Factors That May Contribute to Persistent Symptoms
6 Ed Breitschwerdt, DVM; Bartonella Bacteremia and Neuropsychiatric Illnesses. 2021 LDA CME Conf., 2 Oct. 2021.
7 Why Bartonella is the New Lyme Disease, Dr. Tania Dempsey
8 Colorado Lyme and TBD Support Group Dec 5, 2021 meetup, Dr. Daniel Kinderlehrer
9 Project Lyme: Examining Bartonella, Dr. Joseph Burrascano
10 Molecular evidence of Perinatal Transmission of Bartonella vinsonii susp. berkhoffii and Bartonella henselae to a Child

Additional Resources

MothersAgainstLyme.org

Breitschwerdt explains what’s known and unknown about Bartonella, April 3, 2019

Disclaimer: The author is not a doctor. This article is the opinion of the author and is not intended to dispense medical advice. Please seek a doctor’s advice for diagnosis and treatment. 

Category:

Activism, Autism, Bartonella, Lyme, Ticks, Treatment

A Deer, A Cow, And Learning to Heal From Lyme Disease

https://www.lymedisease.org/deer-cow-lyme-disease-bennett/

A deer, a cow, and learning to heal from Lyme disease

Sept. 6, 2022

by Jamie Bennett

What is your health worth to you? If lost, how far would you go to get it back? These are questions I’ve had a lot of time to think about.

I was living the life. Upwardly mobile in my career, a major crimes detective in her prime. Sure, I had the occasional strep throat, flu, or overall yucky day, but nothing that I thought was different from everyone else. Things were under control, predictable, and manageable…until they weren’t.

After moving to a 26-acre farm and getting pregnant with my third child, things started to change. I. Was. Exhausted. I could barely function, and things that we normally don’t even think about became major blocks.

I had to crawl up stairs because my legs burned, I was short of breath, my heart was on its own agenda, and my head wanted to explode. Taking a shower seemed like a marathon, and I would have to rest when I was done.

The doctors assured me that these were just pregnancy side effects. They said these problems would go away when my son, Thomas, was born.

No symptoms resolved

Once I was a stay-at-home mother of three, however, things never got better. In fact, they were worse. None of my symptoms resolved, but I was too focused on my newborn son to make them a priority.

My little man, who never cried when born, began to regress. Each time he was given a vaccination he would “disappear” for a few days. Then, at 19 months, he didn’t bounce back. My son no longer looked at me. He looked through me with glazed-over eyes. He became completely nonverbal and showed no interest in interacting with others. Classic signs of a spectrum disorder.

After my son’s diagnosis of high-functioning autism, I started biomedically treating him. I was living on adrenaline, squeezing every little bit out of my already-depleted reserves to stay up and research. I altered his diet, got him into speech and physical therapy, and eventually put him in the Head Start program in our county.

We traveled for hours, crossed state lines, and stayed overnight in hotels to see specialists. If it was available, we did it. And he improved! Our son went from having a low IQ to one that was above average. We were making progress, but still, it seemed we were missing something.

Meanwhile, my health that had been put on the back burner needed to be addressed. I was getting worse, and I needed to figure out why. I saw primary care physicians, neurologists, endocrinologists, infectious disease specialists, cardiologists, you name it!

They diagnosed me with a million things, from hypoparathyroidism to congenital heart defects, but no one could find the smoking gun—the root cause of all of my health problems.

I had muscle biopsies, EKGs, EMGs, MRIs, SPECT scans, radioactive scans, heart ablations, bones fused, and organs removed. In response, doctors offered narcotics and various speculations about a cause. First, I was being poisoned. Then, it was psychosomatic. From there I had muscle myopathy, rheumatoid arthritis, lupus, early onset Parkinson’s, and ALS. We continued to treat the symptoms without knowing their cause.

The smoking gun–Lyme disease

Eventually, a doctor found my smoking gun—Lyme disease and its many co-infections. Evidently, I had contracted Lyme and other tick-borne diseases before conceiving my son, and then transferred it to him in utero. In addition, my defiant and academically struggling daughter also tested positive for Lyme.

Fast forward through several years of homeschooling, PICC lines, oral antibiotics, herbals, special diets—including the Specific Carbohydrate Diet and the Autoimmune Paleo protocol—and more doctor visits than we could count. Here you will find us chugging along just like everyone else. Unfortunately, we’re not like everyone else.

Every single person in my family has been diagnosed with at least one tick-borne disease, if not several.  Yet, healing is possible. My son is now testing gifted and in a math program two years above his grade. My daughter is climbing the corporate ladder, one of the youngest to have achieved her position at the company where she works.

And me? Well, after researching the effect of nutrition and biomedical intervention on Lyme, autism, inflammation, and autoimmune disease for two decades, I went back to school.

Functional nutrition

I earned a certification as a Functional Nutritional Therapy Practitioner and Autoimmune Paleo coach so I could help others from a nutritional and biomedical standpoint. Emotionally, I’d say we’re not worse for wear, but our health will always keep us on our toes.

Through all of our difficult times, my mother was my rock, biggest cheerleader, and best friend. Three years ago, she encouraged me to share our story, and I took up that challenge.

The result is a book called There’s A Deer At The Door And A Cow In The Mudroom: Learning to Live while Living with Lyme. My goal is to help others by sharing what I learned from those dark years. Our family’s transformation through faith, farming, and chronic illness was a roller coaster of emotions and learning lessons but certainly not all bad.

The deer my daughter rehabilitated was as instrumental to her recovery as her medication. Waking to find the deer waiting at the door gave her a reason to get up and continue to fight each day. The calf–it really was in the mudroom. It become one of the many farm lessons that molded my children, teaching them to live each moment as though they were never sick.

My mother didn’t live to see the publication of this book, but she was instrumental in helping to bring it about.

My family healed through our various experiences. I hope that learning about what we did can help you heal, too.

Jamie Bennett maintains a website geared towards helping people obtain optimal health. Click here for more information about her book.

__________________

**Comment**

Great read and the book sounds marvelous.  Notice the little nuggets of truth:

  • A “vaccine” once again seemingly served as a trigger for health problems.  They are not safe and effective for ALL people and the risk/benefit ratio MUST be considered by each person. Medicine is not “one size fits all,” and the COVID debacle set us back to the Dark Ages in this area.  Never allow someone bully you into making a decision that YOU and you alone will have to live with for the rest of your life.
  • Necessity pushed this mother to find answers. There are silver linings in having to deal with poor health if you refuse to quit.  There will be dark days for sure, but keep on chugging.
  • Notice how this woman’s mother was her bulwark.  Be a bulwark for someone.  You will never know how your words could help someone out of a dark pit.  I’ve shared it before but it’s worth repeating: I was told by my children’s martial arts teacher, “Lyme has nothing on you.  You have an indomitable spirit and you will survive this.”  At the time I felt anything but indomitable and was questioning the reason for even trudging on.  But, after those words were uttered, I felt myself revive deep inside.  I will never forget those life-affirming, saving words.
  • Notice all the misdiagnoses.  This is a common theme with Lyme/MSIDS and until the root issue of tick-borne illness is dealt with, you will not fully regain your health; however due to politicization, it is often the last thing dealt with.
  • Notice how ALL the things learned and used had a cumulative effect on health.  While addressing the infection(s) is crucial, there are many other facets that also need addressing such as detoxification, hormones, minerals/vitamins, exercise, sleep, psychological issues including anxiety, PTSD, trauma, and so on – and each patient has different needs requiring different methods and treatments. This illness is highly individualized and takes a savvy approach – again, not a “one size fits all” approach – which allopathic medicine ascribes to.
  • Notice the daughter’s rehabilitation of a deer was as important to her recovery as directed treatment.  This deer helped her get her mind off of herself.  We all need something to help us overcome our own selves!  We can actually stand in our own way in healing.  We need productive, healthy outlets to focus on with what little energy we have.
  • Some of the best ideas come from other patients willing to take the time to share their stories and what helped them.  Even if their ideas don’t work for you, it will nudge you to keep looking.
NEVER EVER QUIT!

Category:

Activism, Autism, diet and nutrition, Gut Health, Heart Issues, Lyme, Treatment, vaccines