The CDC Needs a Good Dictionary

October 12, 2017

https://www.lymedisease.org/touchedbylyme-cdc-occur/ by Dorothy Kupcha Leland

TOUCHED BY LYME: Misinterpreting the word “occur” on the CDC website

I’ve long been exasperated by a particular sentence in the Lyme disease section of the CDC’s website:

“This disease does not occur nationwide.”

In a recent blog on the topic, I noted: “Even using the CDC’s own highly restrictive Lyme surveillance criteria, there are cases on the east coast, cases on the west coast, and cases in the middle. So, what about that scenario is NOT ‘nationwide’?”

This is much more than a question of semantics. The CDC position is often used to deny patients a diagnosis. (“Well, the CDC says Lyme is not found nationwide–actually only in certain states–so you couldn’t possibly have Lyme disease….”)

People outside those magic 14 states can have a devil of a time getting diagnosed and treated. They lose the opportunity for early treatment—which offers the best outcome—and may have trouble EVER getting what they need from their doctors.

Well, apparently “this disease does not occur nationwide” also rankled Lyme activist Bruce Fries of Maryland. And he did something about it. He filed a complaint via a formal administrative process with the CDC’s Office of the Associate Director for Science (OADS), Office of Science Quality.

Here’s the complaint he filed:

_____

INFORMATION QUALITY REQUEST FOR CORRECTION

Complainant
Bruce Fries, Patient Centered Care Advocacy Group

Pursuant to the HHS Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated to the Public, the Patient Centered Care Advocacy Group, a patient advocacy organization with members and supporters throughout the United States, makes the following request for correction of inaccurate information.

Information to be Corrected
The CDC website page for Lyme Disease Data and Statistics contains the following statement in the Fast Facts section:

“Lyme disease is the most commonly reported vector-borne illness in the United States. In 2015, it was the sixth most common Nationally Notifiable disease. However this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.”

The statement “this disease does not occur nationwide” is inaccurate.

According to CDC surveillance reports, Lyme disease has been reported in every U.S. state except Hawaii, and the black-legged tick that transmits Lyme disease has been found in 45 percent of U.S. counties.

Impact
In addition to being a violation of HHS guidelines for information quality, the statement that Lyme disease does not occur nationwide has potential to harm patients in states with low incidence rates who are misdiagnosed and denied treatment when doctors rule out Lyme disease because of inaccurate information from CDC that Lyme disease does not occur nationwide.

Recommended Action
To correct the inaccuracy delete the following sentence:

“However this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.”

_____

Lo and behold, Bruce actually got a response, and the offending sentence has been removed from the CDC website!

Dr. Lyle Petersen is director of the Division of Vector-Borne Diseases in the CDC’s National Center for Emerging and Zoonotic Infectious Diseases. He sent Bruce a letter, which said in part:

“We agree that the term ‘occur’ is subject to misinterpretation and that the sentence can be clarified.”

Really? What else might “occur” mean, other than…occur? I’d personally leave the word “occur” right where it is and change the words around it like this: “Although Lyme disease is concentrated heavily in the northeast and upper Midwest, it can occur nationwide.”

But the CDC chose its words differently. Here’s what the website says now:

The website’s amended text is marginally better, since it now allows the possibility of a few more states. But the information is still inaccurate. Take this sentence:

“Infected ticks can also be found …in some areas of Northern California, Oregon and Washington.”

Why just Northern California? According to the California Department of Public Health, infected ticks have also been found in central and southern parts of the state. So, why not just say “California”?

And what’s with this next sentence?

“Although Lyme disease cases are occasionally reported from most other states, this does NOT mean that infection was acquired in those states.”

Why is the CDC hellbent on minimizing this disease? As Lorraine Johnson pointed out in a recent Lyme Policy Wonk blog, other sources of information indicate much more exposure to infected ticks than the CDC is willing to admit. (please see link in comment section about the Canine Maps predicting LD better than the CDC)

Why? Why? Why?

Despite the imperfections of the new language on the website, Bruce Fries deserves kudos for using the administrative process to force the CDC to make some changes.

And the CDC deserves whatever the opposite of “kudos” is, for the unsatisfactory way they “fixed” this problem.

Stay tuned. It won’t be the end of the story.

Join LymeDisease.org
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org

**Comment**

This article is a perfect example of why all things related to Lyme/MSIDS has hardly budged in over 40 years.  When Polly Murray of Connecticut first noticed all the families around her were ill and reported it to the CDC who then identified a chunk of kids with “juvenile arthritis,” a disease primarily of the joints (rheumatology) and skin (dermatology) this narrative has been powerfully protected by the folks who came up with it in the first place – the very people with patents on the organism as well as test kits and other pharmaceuticals that also obtain hefty payments as “experts” for insurance companies who weigh in against patients who are trying to obtain health care coverage.  https://madisonarealymesupportgroup.com/2017/08/29/research-challenges-in-lyme-disease-contagion-live/  (See comment at end of article for such shenanigans)  

All the research, led by the Lyme Cabal, has focused on this initial narrative that refuses to budge, allowing for different findings in the worldwide literature which has shown this disease to defy about everything they initially said about it.  https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/ , and now one pathologist is suing the CDC for their stranglehold on testing due to their own collusion:https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/

The CDC has controlled the narrative of Lyme/MSIDS like the iron curtain, and still doesn’t recognize Lyme/MSIDS in the South or California:  https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/, https://madisonarealymesupportgroup.com/2017/08/07/california-lyme-cases-get-no-respect/

Going all the way back to the 80’s, here’s a story of one Southern doctor who fought the CDC narrative:  https://madisonarealymesupportgroup.com/2017/10/06/remembering-dr-masters-the-rebel-for-lyme-patients-who-took-on-the-cdc-single-handedly/

It’s taking scientists who have Lyme/MSIDS to come up with answers:  https://madisonarealymesupportgroup.com/2016/10/25/hope-for-southerners/

And if the CDC would ever get its head out of the sand, even Canine Maps predict LD better than the ancient and dusty CDC proclamation:  https://madisonarealymesupportgroup.com/2017/08/24/canine-maps-better-than-the-cdcs-in-predicting-lyme-disease/  Between 2011 and 2015, IDEXX collected nearly 12 million Lyme disease test results from US veterinarians on a county-by-county basis. The data indicates that Lyme disease is present in abundance in every state in the US.  The number of canine positive test reports is vastly greater than the number of human cases reported by the Centers for Disease Control (CDC). There are close to one million canine positive test results annually in the US, compared to 38,069 cases included in CDC surveillance reports.

The discrepancy between CDC and canine cases is even more pronounced in the western and southern states. In the West and the South, there are 104,104 cases in dogs annually, compared to 2,342 CDC-reported cases. In other words, there are roughly 50 times more canine cases than CDC surveillance cases.  

The following graphs from Lymedisease.org spell it out perfectly

LPW-canine-chart-2.png

Map-Canine-with-Circles.jpg

Michael Yabsley, a parasitologist at the University of Georgia, and Christopher McMahan, an assistant professor of mathematical sciences at Clemson University, have used the IDEXX canine data to develop a risk forecast map for the predicted Lyme disease prevalence — the percentage of dogs who are likely to test positive — by county in each of the 48 contiguous states. Yabsley explains the predictive relationship:

“Dogs really are the canary in the coal mine for human infection. Our research team has evidence that the relationship between canine disease and human disease is strong. Because dogs are being tested for exposure during annual exams, these data are available on a national scale, something that is difficult to get when studying the ticks and environment directly.”

Someone, please send the CDC a good dictionary so they can look up the word, “occur.”

Category:

Activism, Lyme, Ticks

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Why You May Not Want To Tell Your Employer You Have Lyme/MSIDS

October 11, 2017

thinking-2681494_960_720

Recently I reposted an article called, “Should I Tell My Employer I have Lyme Disease,” https://madisonarealymesupportgroup.com/2017/09/21/should-i-tell-my-employer-i-have-lyme-disease/ which had a positive outcome. Please know there are negative outcomes as well and the following article reveals some helpful information to consider before you tell anyone at your work place you are ill. The article’s advice after the Dailykos link is the opinion of OptiMisTick in New Jersey, an experienced patient and advocate and is not to be construed as medical or legal advice, but is wise counsel all the same.

https://www.dailykos.com/stories/2009/07/07/751100/-How-I-lost-my-health-insurance-at-the-hairstylist-s (go there to read the story)

While the Dailykos article is not specifically about Tick Borne Illness (TBI’s), the synopsis shows that insurers can raise employer rates and then state that if a certain employee were no longer employed, their rates would go back to normal. Then the behind-the-scenes tricks start. The patient’s position is eliminated. They are offered a position they can’t do, is far away, is given a buyout, or not even that. If they are not so lucky, suddenly any mistake is magnified, and they are fired for cause. Thus ends the expensive patient on the employer’s insurance. An older woman who once sat next to me was given a job on the third story of a building with no elevator, after her former job was cut in half as the excuse to get her out. Surprisingly she took the offered job and surprisingly, did the climb. I think the employer was surprised too.

All employers know that Lyme disease is probably chronic, and so do their insurers. This is why insurers “reportedly” turn in doctors. All employers know that sooner or later, with Lyme, the patient is going to start missing work, then come in sporadically, and then have a problem either getting work done or persuading administration to fund Temps. They will possibly use their Long Term Disability. They will cost them and they will receive no work for the cost. The timeline for getting work done will expand and vary, and the resentment can mount up, especially from colleagues who have to take on the work, or the boss may simply resent jumping through extra hoops.

I know someone who used to hang IV’s at work calling them vitamins. The employer was well aware they could not ask medical questions and when the patient told her colleagues it wasn’t really vitamins, they in turn spread the information confided to them.

I have seen situations where employers knew, seemed to be on the side of the patient, and encouraged them to go out on their employee Long Term Disability plan, except the plan would not approve them right away.  If they would agree to go out on Psych; however, they could be approved right away! The Lyme patient so anxious to put this in motion, not knowing there is a 2-year expiration on Psych – and then not returning to work, now had to fight for Federal disability which is nearly impossible because Lyme and Tickborne diseases are NOT in “The Blue Book,” which is the book of allowable diagnoses in Social Security for which doctors can write and document patients as grounds for federal disability payments. By the way I have heard of several cases of forced Psych disability.

Back to employers. As in the article when patients start talking about taking time off, or asking for adjustments, or accommodations which they are legally entitled to, these become key signals to your boss that trouble is just around the corner. They are going to talk to human resources, who know how to get the ball rolling that rolls the patient right out the door. If it is a small business, it will probably be faster, as there are not as many hands to have to go through.

No one has to tell their employer medical information. A person can get the flu or recurring pneumonia, but the word is out on Lyme and TBDs. People don’t just lose their job, they lose health insurance for their families, they lose Long Term Disability covered by employer, they lose Life Insurance, pension accumulation, and more, not to mention, as the article notes, a string of “firings” ruining one’s employability. I know one person put out by an employer ONE day short of 5 years, when they would have been eligible for retirement accrual, and was told, “don’t even set foot in this building”, so that person could never claim to have been there working for that ONE needed day.

 

 

 

 

 

Category:

Activism, Lyme

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Lyme Or Fibromyalgia?

October 10, 2017

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

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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.

____________________________________________________________________________________________

**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

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Today is PANS/PANDAS Awareness Day

October 9, 2017

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

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