Archive for October, 2017

Lyme Or Fibromyalgia?

https://www.lymedisease.org/lyme-sci-fibro/  by Lonnie Marcum

LYME SCI: Is it fibromyalgia–or Lyme disease?

When Lady Gaga recently revealed a diagnosis of fibromyalgia—a set of symptoms characterized by widespread pain that is frequently accompanied by fatigue, sleep disturbances, memory issues and mood changes—I thought of another famous singer, Kris Kristofferson.

The Country Music Hall of Famer was also initially told he had fibromyalgia. As his symptoms worsened over the next 12 years, however, Kristofferson was eventually diagnosed with Alzheimer’s—until he was later found to actually have late-stage Lyme disease. 

Like others in the Lyme community, I couldn’t help wondering if Lady Gaga actually has Lyme disease. It turns out that Alfred Miller, MD, a retired doctor from San Antonio, Texas, has the exact same suspicion.

Mysterious Illness From The 70s
Dr. Miller practiced internal medicine and rheumatology for 40 years, and taught at the University of Texas Medical School in Houston.

He first learned about Lyme disease at a medical conference in 1977, when he heard Dr. Allan Steere describe an epidemic of arthritis-like symptoms in children near Lyme, Connecticut. Five years later, Dr. Wilhelm Burgdorfer would identify a tick-borne species of Borrelia as the causative agent of what came to be known as “Lyme disease.” (It’s named Borrelia burgdorferi in his honor.)

Years later, Lyme disease would tragically affect a member of Dr. Miller’s own family.

A Missed Diagnosis Of Lyme Disease
Shortly after Dr. Miller retired, his 43-year-old daughter-in-law, living in Boston, came down with a mysterious illness. She was evaluated by top doctors at three prestigious teaching hospitals, and given a terminal diagnosis of amyotrophic lateral sclerosis (ALS).

But, according to Dr. Miller, something didn’t line up. Although she had all the symptoms of ALS, he thought the lesions in her MRI looked more like multiple sclerosis.

ALS, also known as Lou Gehrig’s disease, is a progressive degenerative nerve disease with no cure. Not willing to accept this diagnosis for his daughter-in-law without being extra-sure, Dr. Miller did some research.

He states, “When I went to the medical literature, the only illness that could present the MRI of the brain of MS and the physical findings of ALS was neuroborreliosis” — late-stage Lyme disease which has spread to the central nervous system.

As a physician trained at the Mayo Clinic, Dr. Miller reached out to his colleagues there and asked that they look at the possibility that she might have Lyme. However, her ELISA test came back negative, as is the case in approximately 50% of patients who actually have Lyme disease.

From there, Dr. Miller did what many physicians experienced in Lyme disease do—he sent her blood to a specialty lab that reports all the bands on the Western blot. Lo and behold, her test came back positive for Lyme.

In this video, Dr. Miller explains how most standard tests for Lyme will miss the diagnosis and why the Western blot must include all bands: (This link contains the entire series by Miller)  https://madisonarealymesupportgroup.com/2017/05/11/dr-al-miller-lyme-disease-series/

Rheumatologist Turned Lyme Activist
Since his daughter-in-law’s diagnosis, Dr. Miller has made it his mission to educate others about the risks of Lyme disease being mis-diagnosed. He believes all patients who have been given a diagnosis of a neurodegenerative disease—including ALS, MS, lupus, and fibromyalgia—should be evaluated for Lyme disease.

While there are distinct differences in the later stages of these illnesses, they are almost all accompanied by pain, fatigue, sleep issues, cognitive issues, headache, numbness and tingling.

According to a survey of over 4000 patients with Lyme disease, “roughly 20% of those with chronic Lyme disease were initially misdiagnosed with a neurologic disease” including MS, ALS, Parkinson’s and multiple systems atrophy.

When To Suspect Lyme Disease
Unfortunately, fibromyalgia has no cure and a diagnosis may lead to a dead-end when looking for potential causes. Because there is overlap with the symptoms, many patients with Lyme disease are initially diagnosed with fibromyalgia. The good thing is Lyme disease is treatable and for many patients, treatment resolves their pain.

Women are twice as likely to be diagnosed with fibromyalgia, with the average patient going five years before getting a diagnosis. Interestingly, women are also more prone to false-negative testing for Lyme, leading to a delayed diagnosis of more than two years in over 60% of the cases.

Because so many patients with Lyme disease are frequently misdiagnosed, LymeDisease.org has created an easy to use checklist that you can fill out and take to your healthcare provider. Click here to check your symptoms:  https://www.lymedisease.org/lyme-disease-symptom-checklist/

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .

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For More:  https://madisonarealymesupportgroup.com/2016/06/09/alzheimers-byproduct-of-infection/

https://madisonarealymesupportgroup.com/2016/11/17/antibiotics-and-alzheimers/

https://madisonarealymesupportgroup.com/2016/04/10/bugs-causing-alzheimers/

https://madisonarealymesupportgroup.com/2017/09/26/silent-epidemic-of-early-onset-alzheimers/

https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/

Category:

Activism, Lyme, Treatment

Refusal to Vaccinate Child Gets Mom Jail Time: A Deeper Analysis

http://www.greenmedinfo.com/blog/refusal-vaccinate-child-gets-mom-jail-time-deeper-analysis

Refusal to Vaccinate Child Gets Mom Jail Time: A Deeper Analysis

October 7th 2017 at 10:15 am
Written By: Jefferey Jaxen

“I want to make it perfectly clear. We’re leaving here today. Dad’s picking the child up and he’s going to be vaccinated regardless of what Mom did or didn’t do.” 

These were the words of Oakland County judge Karen McDonald during the open minutes of the recent court room proceedings that continue to grab international headlines. Metro Detroit’s Rebecca Bredow, the Mom, now sits in an Oakland Country jail with a criminal record forever attached to her name. Her 9-year-old son is now in temporary custody of his father who is ordered by the court to bring the child up to date on the boy’s vaccination status, which will be up to eight vaccines “…as rapidly as medically necessary.”

Unfortunately in America, the end result of cases like Bredow’s are becoming more and more common.  

Some are saying Bredow refused to vaccinate her child and is getting what she deserved but is it really that simple? The mainstream, corporate media narrative is attempting to paint a picture that Bredow’s case is an uncommon, one-and-done occurrence. The narrative is also suggesting that the family court process, when vaccination status is concerned, is a stone solid justice machine based on ‘settled vaccine science.’ The reality is that the judge and the court are taking a known and dangerous medical risk with another person’s child that they have no right to take. Do courts have the right to order an unavoidably unsafe medical intervention like vaccination in custody cases?

 At minute 3:30 Judge McDonald makes clear her forced vaccination agenda. 

Joel Dorfman of Michigan for Vaccine Choice, a group that advocates for parents’ rights to refuse vaccines told the Detroit Free Press, “If this child is injured as a result of being given eight immunizations, who do you think is going to take care of the child? The judge?”

According to Judge McDonald, Bredow’s case is about her refusal to follow court orders she previously agreed to. McDonald ruled Bredow was in criminal contempt for not following a 2016 agreement to vaccinate her child. However Bredow says that her attorney at the time signed the order and advised her not to worry since she had filed state waivers and vaccine exemptions each year in Michigan for her child. In Michigan, parents or guardians of children enrolled in public and private schools are required to attend an educational session before they are granted waivers.

Charlie Langton ✔@charlielangton

Mom goes to jail for not vaccinating her kid. But what is this case really about? On @FOX2News – @WWJ950

Twitter Ads info and privacy

Lecturing from the bench, Judge McDonald told Bredow “I understand you love your children. But what I don’t think you understand is that your son has two parents, and dad gets a say,” Her statement seems reasonable yet it is important to note that Bredow has primary caregiver status. Digging deeper into the information of the case, Judge McDonald’s recent ruling gives physical custody of the child to the ex-husband James Horne. In the past, Child Protective Services did an investigation on Horne and the case was confirmed as a Category 3 revealing a preponderance of evidence against him which the court knew about.

What about medical expert testimony? Although Bredow’s case didn’t involve the testimony of an expert witness or medical professional, this tactic is often a nonstarter in US courts. The courts don’t decide and rule on the science, their job is to weigh the evidence. For each doctor or expert witness brave enough to go on record against the safety of vaccines in a given case, there are many more doctors who are will testify for them. In addition, all US health agencies and organizations still toe the line for the false ‘safe and effective’ vaccine narrative and refuse to factor in any new or highly relevant information that says otherwise.

During the recent ruling, Judge McDonald appeared to be reading from a prewritten statement when handing down her decision suggesting that she did not factor in the day’s testimony and dialogue. If that is the case, perhaps McDonald’s prewritten decision was in response to the attention Bredow drew to the case by going to the media. Section 600.1715 of Michigan’s Revised Judicature Act of 1961 states:

“If the contempt consists of the omission to perform some act or duty that is still within the power of the person to perform, the imprisonment shall be terminated when the person performs the act or duty or no longer has the power to perform the act or duty…”

The “act or duty” to vaccinate Bredow’s 9-year-old child was ordered by the court to be done by the ex-husband. In addition, Bredow no longer had the power to perform the act or duty in question. It seems that, given the language of the act, Bredow’s jail time was handed down as a warning and a lesson rather than a necessary legal measure.

Call To Action: Please Sign the Petition

Sign the Petition Here: https://www.thepetitionsite.com/436/753/272/free-rebecca-bredow-end-her-unlawful-imprisonment-now/

jeffereyjaxen

Jefferey Jaxen is a researcher, independent investigative journalist, writer and voice for health freedom on the front lines of society’s shift towards higher consciousness.  Visit his website here to learn more.

This work is reproduced and distributed with the permission of GreenMedInfo LLC. Want to learn more from GreenMedInfo? Sign up for the newsletter here http://www.greenmedinfo.com/greenmed/newsletter.”

Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of GreenMedInfo or its staff.

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**Comment**

Regardless of your opinion on vaccinations, this story should trouble you.  More and more medical decisions are being made by “authorities” who aren’t the parents.  This is why I support the Parental Rights Amendment – an amendment to our Constitution giving parents their rights back.

Right now in America, children with Lyme/MSIDS are being told they made it all up https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/.  Parents are being told they have Munchausen syndrome by proxy or are flat out accused of child abuse https://madisonarealymesupportgroup.com/2017/01/11/sick-shaming-of-lymemsids-patients/, and https://madisonarealymesupportgroup.com/2017/08/24/dutch-lyme-patients-accused-of-child-abuse/.

The injustice and abuse against Lyme/MSIDS patients is unbelievable.  

For more on the Parental Rights Amendment:  https://madisonarealymesupportgroup.com/2017/04/20/why-we-need-the-parental-rights-amendment/

https://madisonarealymesupportgroup.com/2017/02/21/parental-rights-in-medical-settings/

Category:

Activism, vaccines

Today is PANS/PANDAS Awareness Day

https://www.facebook.com/pandasawarenessday/  October 9, 2017

The following article is just one example of how children are affected by a hard to diagnose complex illness called PANDAS or PANS.  Infections such as Lyme/MSIDS can trigger it and one prominent Wisconsin LLMD states that 80% of his PANS patients have it.  

http://www.charlotteobserver.com/news/local/community/lake-norman-mooresville/article172666411.html

carsonCarson Spears, 11, has PANS, a disorder where his body’s antibodies attack his brain instead of foreign pathogens. Homeopathic treatment has helped him, however. Kate Stevens

It started with strep throat. Then ‘it’s like your kid died but they’re still there’

BY KATE STEVENS

SEPTEMBER 11, 2017 3:16 PM

Carson Spears was just like the other pupils in kindergarten. The bubbly little boy loved to play outside and had plenty of friends.

Then, Carson came down with his first case of strep throat.

He didn’t respond to antibiotics and his sore throat and fever worsened, said Carson’s mother, Melissa Spears.

After changing antibiotics three times over a two-week period, Carson seemed to improve.

But on Sept. 24, 2011 — his mother remembers the date — the Spears family’s only son came downstairs a changed boy.

Carson had developed an unusual and noticeable eye tic seemingly overnight.

Her son’s eyes were traveling back and forth as if to the 10 and two position on a clock over and over, said Melissa Spears, 37.

By the time she returned home from work that afternoon, she counted Carson’s eyes tics at about 80 per minute, she said.

Cory Spears said his son’s obsessive tics reminded him of an android in a science-fiction movie.

“You ask him a question and he can’t compute,” Cory Spears recalled. “That’s what I relate it to. Everything reset.”

This initial symptom of uncontrollable eye tics began the Spears’ journey into learning about Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, a disorder resulting from an infection or environmental trigger causing abnormal activation of the immune system.

The Spears family of Mooresville has fought for the past six years to bring back Carson from this disorder that nearly robbed him of his personality.

“It’s like your kid died but they’re still there,” said Cory Spears, 39.

The Spears family hopes to educate others about PANS on Sept. 16 when they will participate in the PRAI for 100K 5K fundraiser at Marvin Ridge High School in Waxhaw.

The fundraiser is held by the Pediatric Research & Advocacy Initiative, or PRAI, a nonprofit organization whose mission is to find answers for children affected with neuroimmune disorders.

The disorders could affect as many as one in 200 children, most of whom are misdiagnosed or undiagnosed, according to PRAI statistics.

Awareness events like these fundraisers help educate people who may not have even heard of PANS and helps those diagnosed with PANS to realize there are others like them.

“The biggest thing that worries me about families with PANS kids is they think they’re alone,” said Cory Spears.

Carson’s eye tics were the first symptoms that eventually led to an unofficial diagnosis of PANDAS six years ago by his eye specialist.

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS, is a subset of PANS and is linked to a recent streptococcal infection, according to PRAI.

“We are very, very, very fortunate that we had an unofficial diagnosis within 24 hours of onset symptoms,” said Melissa Spears. “Some parents go years.”

‘It hurts worse than average’

PANS is related to other bacterial or viral infections, including strep but other co-diseases, as well, Melissa Spears said.

Antibodies in a healthy person will attack a foreign antigen like a virus or bacteria once it enters the body to prevent illness, said Melissa Spears. For a person with PANS or PANDAS, the antibodies will instead attack the person’s brain instead of the foreign antigen, she said.

The inflammation of the brain can cause symptoms including terrible headaches, obsessive compulsive disorder, anxiety, sleep disturbances and aggression in children with PANS or PANDAS, Melissa Spears said.

When Carson has a “flare,” as the Spears family calls it, he says it feels like “his brain is on fire,” Melissa Spears said.

“It sort of feels worse than other people would think it would,” said Carson, now 11. “Other people are like, they’re thinking that I’ll be OK over time but it hurts worse than average.”

After Carson’s unofficial diagnosis in 2011, the family was left on its own to discover who could treat their son.

Meanwhile, Carson’s symptoms multiplied. He became withdrawn and began having issues focusing and completing tasks. He would leave lights on all over the house and leave cabinet doors open. He developed a life-changing fear of anything that flew, including insects and birds.

Carson developed severe separation anxiety from his parents and refused to go into a room alone or sleep in his own bed.

“He didn’t leave the house one summer,” Melissa Spears said.

Treatment trail

Over the next two years, the family took Carson to five doctors from Greensboro to Charlotte to Matthews where the Spears experienced backlash from physicians.

Doctors didn’t believe the disorder was real or thought Carson’s problems were psychiatric, said Melissa Spears.

The family spent $17,000 seeking medical answers the first year after Carson was diagnosed, Melissa Spears said.

After trying different medicines and going to local doctors “that didn’t listen to us as parents,” Melissa Spears turned to Dr. Rosario Trifiletti, a New Jersey neurologist who, at the time, was one of the few in the world who specialized in PANS/PANDAS cases.

During a phone appointment, Trifiletti listened to the Spears’ story and ordered lab work for all the family members, including Carson’s younger sister, Braxtynn.

Lab technicians took 17 vials of blood from Carson, then just 7 years old.

Trifiletti officially diagnosed Carson with PANS, not PANDAS, due to the active co-infections found in his blood work: mycoplasma, the bacteria that causes pneumonia; coxsackie — the virus causing Hand, Foot and Mouth disease; streptococcus, the bacteria causing strep throat; bartonella and babesia — a bacteria and parasite related to Lyme disease; and yeast, Melissa Spears said.

Instead of attacking these infections, Carson’s antibodies were instead going after his brain.

Carson began taking antibiotics daily for two years, as well as Tylenol and Ibuprofen, but his symptoms, although better, persisted. His parents began worrying how the treatment was affecting his already fragile body.

They decided something new had to be done.

‘Changed our lives’

At a crossroad, Melissa and Cory Spears could either commit to a $25,000 intravenous immunoglobin treatment commonly used for cancer patients to reset their immune systems or try integrative medicine and homeopathy.

The family found Dr. Angelica Lemke, a naturopathic doctor or ND, online.

After a 3 1/2 hour initial Skype consultation, Lemke asked for 30 days to see if her remedies would make a difference in their lives.

“My experience is that for the rapidly growing group of kids like Carson who have been diagnosed with PANS, and who often tend to have significant sensitivity, damage or imbalance in their immune system, homeopathy is a very excellent tool because it is specific enough to be tailored to each individual, gentle enough to not cause more harm than good, and when used correctly is particularly well-suited for improving or balancing children’s immune response to infections,” said Lemke through an email interview.

Three weeks in, Lemke’s treatment “changed our lives,” Cory Spears said.

Carson stopped waking in the middle of the night and he would actually go into a room alone, Melissa Spears said.

Instead of antibiotics, Melissa Spears picks from a number of paper packets containing nosodes, a diluted form of a disease used to treat that same disease.

Carson then drinks the nosode after it is dissolved in a small amount of water.

The nosodes teach the body to recognize the disease and then push it out, said Melissa Spears.

The family also diffuses essential oils and applies them topically to aid Carson’s immune system as well as purifies the air inside the home since toxins can make him sick. No one wear shoes inside the house to keep germs from getting inside.

Carson also avoids cow’s milk, which affects his ability to focus.

The homeopathic treatments have worked miracles and for that they are grateful.

“Our goal is to heal his immune system so that he will no longer have to battle this disorder on a daily basis,” said Melissa Spears.

The homeopathic treatments cost less than $500 annually, substantially less than some western medical treatments, the Spears family said.

A new Carson

The family feels they pretty much got Carson back about two and a half years ago, thanks to Lemke’s homeopathic treatments.

Today, Carson is a sixth-grade student in the gifted program at Mooresville Intermediate School.

He communicates his needs with his teachers and will work in the hallway quietly if he needs a break from the noisy group work that comes with some of his lessons, Melissa Spears said.

He enjoys playing Xbox, collecting and sorting his Pokemon trading cards and playing basketball with friends down the street, he said.

“Over the years it will get better if you have it,” said Carson. “I’ve gone through hard times with it and I’ve been healed from it. I hope other people are able to heal from it too.”

Kate Stevens is a freelance writer: katebethstevens@icloud.com

LEARN MORE
For information about PANS/PANDAS, please contact Melissa Spears at melissajspears@gmail.com or Cory Spears at coryaspears@gmail.com

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For more:  https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/09/19/three-things-for-parents-to-watch-for-regarding-tbis/

https://madisonarealymesupportgroup.com/2017/09/05/when-lyme-isnt-caught-early/

Bartonella:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

Babesia:  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

Mycoplasma:  https://madisonarealymesupportgroup.com/2016/02/07/mycoplasma-treatment/

Viruses:  https://madisonarealymesupportgroup.com/2016/03/28/combating-viruses/

Some LLMD’s are using a treatment called LDA/LDI to treat immune dysfunction:  https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/  In short, it is transdermal injections every two months with substances that a person reacts to and can include anything from mold to dust, to Bartonella and Lyme.  The principle is somewhat like homeopathy as mentioned in the article.

 

Category:

Activism, Babesia, Bartonella, PANS, Psychological Aspects, Treatment

Bb in California Chipmunk and Squirrels

http://online.liebertpub.com/doi/abs/10.1089/vbz.2017.2134#utm_source=FastTrack&utm_medium=email&utm_campaign=vbz

Distribution and Diversity of Borrelia burgdorferi sensu lato Group Bacteria in Sciurids of California

Roy Austin N., Straub Mary H., Stephenson Nicole, Sholty Kathleen E., and Foley Janet. Vector-Borne and Zoonotic Diseases. October 2017, ahead of print. https://doi.org/10.1089/vbz.2017.2134

Online Ahead of Print: October 4, 2017

ABSTRACT

California has a remarkable diversity of squirrel and chipmunk species (sciurids), and five named and several unnamed genospecies in the Borrelia burgdorferi sensu lato group (BBSL) of bacteria as well, many of which utilize sciurids as reservoirs. We investigated the prevalence, spatial distribution, and diversity of BBSL in sciurids of California by literature search, PCR of 585 ear tissue samples from 15 sciurid species prospectively collected across 19 California counties, and DNA sequencing when possible. Seven publications documented BBSL infections in western gray squirrels (Sciurus griseus), fox squirrels (Sciurus niger), eastern gray squirrels (Sciurus carolinensis), Douglas squirrels (Tamiasciurus douglasii), and redwood chipmunks (Tamias ochrogenys) in northern California. Prospective sampling added new BBSL infection records for long-eared chipmunks (Tamias quadrimaculatus), Allen’s chipmunks (Tamias senex), and Siskiyou chipmunks (Tamias siskiyou). Infection was detected in the Mendocino, North Coast, West Sierra, and Central Valley regions of California.

The overall PCR prevalence was 9.4% (n = 585), and exceeded 40% (n = 84) in Mendocino and farther north along the Pacific coast. Redwood (40.7%, n = 81) and Siskiyou (22.2%, n = 18) chipmunks had the highest prevalence of BBSL infection. BBSL infections were associated with arboreal and semiarboreal sciurid species and species occurring in conifer forests. Western gray squirrels and Allen’s chipmunks in Humboldt County and redwood chipmunks in Mendocino County were infected with B. burgdorferi sensu stricto, while we identified Borrelia bissettiae in Douglas squirrels and Siskiyou chipmunks in Humboldt and Del Norte Counties. This indicates that further study of sciurids can aid in describing the ecology of BBSL in California.

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For more:  https://madisonarealymesupportgroup.com/2016/10/02/the-role-of-birds-in-tickborne-illness/

https://madisonarealymesupportgroup.com/2017/08/17/of-birds-and-ticks/

 

Category:

Lyme, research

Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

https://www.huffingtonpost.com/entry/misdiagnosed-how-children-with-treatable-medical-issues_us_59d6b302e4b0705dc79aa68f by A. Elizabeth Washington, Writer, Advocate, Mother

Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

10/05/2017 

In the fall of 2015, eleven-year-old Sophia Cahill* began blinking her eyes. Though an eye doctor dismissed the blinking as a symptom of dry eyes, her parents would look back later and realize the blinking was a tic. Sophia was otherwise healthy and unbothered by the blinking so life carried on as usual. The simple tic would unfortunately foreshadow much darker days to come.

As Sophia entered seventh grade the following year, she enjoyed spending time with friends and family, performed well academically, and excelled in several sports. She played softball and skied black-diamond slopes with ease. With a love of horseback riding, she had spent two weeks the prior summer at an overnight riding camp. Independent and responsible, she had flown alone across the country to see her cousins and was a trustworthy babysitter for her siblings. Sophia was happy and healthy, with a precocious sense of humor and an easygoing demeanor. Sophia’s parents, both medical doctors, had no concerns about her behavior or health that could have predicted that her life would soon be dramatically and abruptly turned upside down.

Shortly after the school year started, Sophia became sick with a virus and then pneumonia. The illnesses would have been easily forgotten were it not for the troubling episodes that began the following month. Out of the blue and generally in the evenings, Sophia would become extremely distressed and inconsolable, crying for hours at a time. In a state of extreme anguish, she’d rip up boxes of Kleenex, pound her fists on the bed, and repeat bizarre and senseless phrases. Her pupils would dilate and with sheer terror in her eyes and panic on her face, she would scream “Mommy! Mommy, help me!” but no amount of consoling could ease her suffering. Eventually, her hysterical sobbing was punctuated with the disturbing sight and sound of the usually calm twelve-year-old banging her head against the wall. By the wee hours of the morning, she would collapse from utter exhaustion and fall sleep.

The morning after each episode, Sophia would awake in good spirits showing no signs of the turmoil that had transpired the night before. A few nights would pass before another episode would occur. Gradually the episodes became more frequent and began lasting longer. Within three months, she had racked up a number of mental health diagnoses from several different doctors and had started an SSRI, yet her mental health continued to deteriorate.

Shortly after the New Year, the distressing symptoms that Sophia had exhibited only intermittently in the prior months turned into an around-the-clock nightmare for her and her family. With the addition of peculiar involuntary movements and constant moaning that would later be recognized as a vocal tic, Sophia was admitted into the hospital.

While hospitalized, her mother received a call from the pediatrician. The strep titers that she had asked the pediatrician to order were positive. This indicated that Sophia had likely had a fairly recent strep infection. Coupled with her dramatic neuropsychiatric deterioration, the pediatrician believed her mother’s suggestion that Sophia might have pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, commonly referred to as PANDAS, was likely accurate. She asked that Sophia’s mother discuss the possibility with the doctors at the hospital. Because Sophia also had a virus and pneumonia in the month before her symptoms began, pediatric acute-onset neuropsychiatric syndrome, or PANS, was also a consideration. PANDAS, a subset of PANS, requires documentation of previous strep infection. Diagnosis of PANS does not require identification of a specific trigger.

Sophia’s parents shared the labs and their suspicions with the hospital, but the attending physicians were adamant that Sophia did not have PANS. Relentlessly symptomatic, Sophia was transferred to an inpatient child and adolescent unit at another hospital with a diagnosis of anxiety. Here too, her symptoms continued to worsen and she developed an extreme startle response, jerking violently at the slightest sound. One week passed and high doses of anti-psychotics, beta-blockers, and other medications as well as additional investigation into medical causes produced no relief. Desperate for help, Sophia’s parents brought her back to the first hospital.

An MRI, EEG, and lumbar puncture provided no insight into what might be wrong and a neurologist reported she could find nothing amiss neurologically. After seeing another psychiatrist, Sophia picked up yet another diagnosis. This time her parents were told she had a conversion disorder and that they were to bring her home and behave as though nothing was wrong with her. With that, Sophia was discharged from the hospital.

At home, she continued to moan around the clock, jerked her arms uncontrollably, screamed hysterically, and was frequently catatonic. Frantic for answers, Sophia’s parents took her to yet another psychiatrist. This time she was diagnosed with a panic disorder, and though the psychiatrist admitted he honestly was not sure what was wrong with her, he prescribed two different anti-psychotics in an effort to stabilize her.

The attempt failed and by February, Sophia had refused to eat or drink for a full week. Treated for dehydration and released by the hospital, she was sent to an in-patient psychiatric facility. She was initially placed on an eating disorder unit and then moved to the OCD and anxiety unit. The two psychiatrists who evaluated her quickly encouraged her parents to have Sophia evaluated by a doctor who specialized in PANS and PANDAS. Sophia and her parents traveled out of state to see a specialist. With a virus and pneumonia preceding her initial neuropsychiatric symptoms, as well as positive streptococcus titers, the specialist confidently diagnosed Sophia with PANS and its subset PANDAS. Returning to the psychiatric facility with a proper diagnosis and treatment plan in place, Sophia was discharged.

Still suffering horrifically, Sophia tried to end her own life two days later. She was rushed back to the same hospital that had encouraged her parents to take her home and behave as though nothing was wrong the month before.

Now open to the possibility of PANS, hospital physicians agreed to treat her with intravenous immunoglobulin, or IVIG. Derived from the plasma of over a thousand donors, IVIG is used to treat a number of serious and life threatening medical conditions, including PANS. Sophia also underwent plasmapheresis, a procedure in which the plasma is separated from the blood cells, treated to remove auto-antibodies that may be attacking the body, and then returned to the body. Next she received Rituximab, a medication that halts autoimmune disorders by targeting and destroying B-cells, a type of blood cell responsible for antibody production

Though patients receiving these treatments often wait eight or more weeks for relief, Sophia was well enough to leave the hospital by the end of the month. Just as she was beginning to resume a few normal activities, pharyngitis caused relapse and she was readmitted to the hospital for an additional six weeks of aggressive immunomodulatory therapies, antibiotics, tonsillectomy and adenoidectomy. This time, the treatment would provide complete remission.

Four months after her final release from the hospital, Sophia is functioning just as well today as she had been prior to the onset of PANS. She is content, doing well academically, and on the school volleyball team. Surrounded by friends to celebrate her thirteenth birthday last month, Sophia showed no evidence of the year-long nightmare she had endured.

To understand how the physicians of a highly regarded hospital system could repeatedly misdiagnose Sophia, it is helpful to understand the history of PANS and PANDAS. National Institute of Mental Health researcher, Dr. Susan Swedo, first recognized what would come to be called PANDAS more than 25 years ago. While researching Sydenham’s chorea and obsessive-compulsive disorder (OCD), the mother of a patient with severe OCD and tics mentioned that her son had strep throat less than two weeks before his onset of symptoms. She had also noticed her older son’s tics would worsen a couple days before the start of a sore throat and positive strep test. As Dr. Swedo investigated further, she became aware that other infections also triggered OCD, tics, psychiatric issues, and behavioral problems in certain children.

Focusing early research on strep-triggered cases of obsessive-compulsive and tic disorders, Dr. Swedo published a paper in 1998 that provided clinical description of the first 50 children she had observed with PANDAS. All cases were characterized by an abrupt onset of OCD or tics following a strep infection. Many of the children also suffered from emotional lability, changes in school performance, personality changes, bedtime fears, separation anxiety, irritability, sensory defensiveness, impulsivity, distractibility, deterioration in handwriting and math skills, oppositional defiant behaviors, and nightmares (1).

A small handful of neurologists were swift to criticize the research. Quickly labeled as controversial, Dr. Swedo and other researchers would find themselves defending the concept of PANS for decades to come. Ruthless in their attack of PANS and PANDAS, several critics published a paper in 2012 in the Journal of Pediatrics titled “Moving From PANDAS to CANS (2).” Despite a large body of evidence to the contrary, they again called into question the scientific evidence for its existence. They also criticized the use of antibiotics to treat children with abrupt onset OCD and tics despite evidence that the health of many children with PANS was restored with antibiotic treatment.

After the paper was published, it was revealed that three of the authors, Dr. Roger Kurlan, Dr. Harvey Singer, and Dr. Donald Gilbert, failed to disclose that they had received financial support from the pharmaceutical company Psyadon (3). The company manufactures a medication for tics, providing a possible motive for their persistent criticism of the concept of PANS and use of inexpensive antibiotics to treat it.

Despite the frequent negative publicity, significant progress has been made in the understanding and treatment of PANS. In 2012, Lucile Packard Children’s Hospital at Stanford started a program treating children with PANS. In 2013, they hosted a conference with a number of experts from prestigious medical institutions and published a paper with clear diagnostic guidelines (4). In February 2015, an entire edition of the Journal of Child and Adolescent Psychopharmacology (5) was dedicated to PANS and PANDAS and in 2017, the same journal published three articles detailing full treatment guidelines (6). The articles were co-authored by an incredible team of experts like Dr. James Leckman, Professor of Child Psychiatry at Yale University, who served as the Director of Research for the Yale Child Study Center for more than twenty years; Dr. Mark Pasternack, infectious disease doctor and Associate Professor of Pediatrics at Harvard University; Dr. Jennifer Frankovich, PANS rheumatologist and Director of the PANS Program at Stanford; and more than two dozen other experts from prominent institutions.

Though experts consider the controversy to be resolved, the vast majority of pediatricians, child psychiatrists, and neurologists are unapprised of the latest research and continue to misdiagnose children who have PANS with any number of mental health disorders. The PANDAS Physician Network, an organization that educates medical professionals and sponsors research of the disorder, lists only one or two physicians who treat PANS in many states. Considering that by National Institute of Mental Health estimates, at least 350,000 children in the United States have PANS, the number of doctors who recognize and treat it is woefully inadequate to meet the needs of suffering children.

For now, many children with PANS continue to wait for the medical community to catch up to what experts have known for decades. We can only hope they’ll be as lucky as Sophia and receive proper medical attention before it’s too late.

 

*Name has been changed to protect privacy.

 

References

1. Swedo, Susan E., et al. “Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: clinical description of the first 50 cases.” American Journal of Psychiatry 155.2 (1998): 264-271.

2. Singer, Harvey S., et al. “Moving from PANDAS to CANS.” The Journal of pediatrics 160.5 (2012): 725-731.

3. Singer, Harvey S., et al. “Moving from PANDAS to CANS.” The Journal of pediatrics 160.5 (2012): 725-731. (see correction)

4. Chang, Kiki, et al. “Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference.” Journal of Child and Adolescent Psychopharmacology 25.1 (2015): 3-13.

5. Chang, Kiki, Harold S. Koplewicz, and Ron Steingard. “Special issue on pediatric acute-onset neuropsychiatric syndrome.” Journal of child and adolescent psychopharmacology 25.1 (2015): 1-2.

6. Swedo, Susan E., Jennifer Frankovich, and Tanya K. Murphy. “Overview of Treatment of Pediatric Acute-Onset Neuropsychiatric Syndrome.” Journal of Child and Adolescent Psychopharmacology (2017).

For More:  https://madisonarealymesupportgroup.com/2017/10/03/treat-the-infection-psychiatric-symptoms-get-better/

https://madisonarealymesupportgroup.com/2017/04/11/hidden-invaders-infections-can-trigger-immune-attacks-on-kids-brains-provoking-devastating-psychiatric-disorders/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

 

Category:

Activism, Lyme, PANS, Parasites, Psychological Aspects, Treatment, Viruses