Archive for the ‘Psychological Aspects’ Category

CORRUPTION in the Lyme Caucus?

https://www.linkedin.com/pulse/corruption-lyme-caucus-jenna-luche-thayer/

CORRUPTION in the Lyme Caucus?
Published on Published on October 16, 2017
Jenna Luche-Thayer
jennaluche@gmail.com

Friends,

I recently posted an article expressing concerns about the representation and motivation of those making up the Lyme Caucus – see Does the Congressional Lyme Caucus Represent You?

I then shared an analysis of the voting record of the Caucus members regarding health care coverage for those with chronic illness – including those with persistent and complicated Lyme.

As noted, “SIX members of the Lyme Caucus DO NOT support current protections for insurance coverage for those with chronic illness, including those with chronic Lyme. They are: Lou Barletta (PA-11), John Faso (NY-19), Tom Marino (PA-10), Bill Posey (FL-8), Tom Reed (NY-23) and Glenn Thompson (PA-5)”

On October 15, 2017, investigative journalists reported that Tom Marino has been fully implicated in driving and passing legislation that makes it virtually impossible for the Drug Enforcement Agency (DEA) to persecute pharma or the doctors that promote pain pills [1].

The opioid epidemic is increasing every year. In the USA, 64,000 people died from drug overdoses in 2016 – most of these deaths were from opioids. Drug overdoses are now the leading cause of death among Americans under 50 [2].

These discoveries are linked directly to my analyses where I speak about the abuses inherent in the fraudulent Post Treatment Lyme Disease Syndrome (PTLDS). For example,

“CDC discrimination practices includes PTLDS. As noted, PTLDS is a condition that transforms a Lyme patient into a person who should be treated for MUS [hypochondria] rather than a systemic infection… Based on information from the CDC report Incidence of Clinician-Diagnosed Lyme Disease, United States, 2005–2010, and other sources, there are approximately 300,000 cases of Lyme per year. According to the CDC website, approximately twenty percent will fail to be cured [by the 2006 IDSA guidelines] and will be classified as having PTLDS [3].

Given these numbers, the CDC’s recommended treatments for PTLDS include exposing potentially 60,000 persons a year to the risk of painkiller [opioid] addiction. PTLDS -linked-MUS has the potential of erroneously adding 60,000 persons per year to the mental illness category. Therefore, since 2005 [until 2016], the CDC Lyme policy has created situations wherein 720,000 patients may be potentially misclassified as mentally ill and increased the risk of addiction to pain killers for as many as 720,000 people.”

So, not only has Marino voted against Lyme patients having access to covered medical care, he has also ensured an unregulated pain pill industry. Lyme Caucus member Marino has put Lyme patients into double jeopardy.

Why is Marino on the Lyme Caucus? Is it to ensure that 100s of thousands of undiagnosed, untreated and undertreated Lyme patients can be victimized by the hugely profitable and deadly opioid epidemic?

By the way, Trump has just named Marino to be his drug Czar. Looks like the fox is officially in the hen house.

………………………………………………………………………………………………………………………

[1] See Washington Post ‘The Drug Industry’s Triumph Over the DEA’ by Scott Higham and Lenny Bernstein -10.15.2017.

[2] See New York Times ‘Drug Deaths in America Are Rising Faster Than Ever’ By Josh Katz – 6.5.2017.

[3] see webpage CDC Post-Treatment Lyme Disease Syndrome – under References, under Human research: Marques, A. Chronic Lyme disease: a review. Infect Dis Clin North Am 2008; 22:341–60. Accessed Oct. 15, 2017 – https://www.cdc.gov/lyme/postlds/index.html

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**Comment**

As you can see, we must be forever vigilant with all things legislative as they can and often backfire.  Please contact and be in contact with your Representative to make sure their driving force on the Lyme Caucus is to help chronically ill people be recognized and properly treated.  

Thayer knows that of which she speaks:  https://madisonarealymesupportgroup.com/2017/09/16/lyme-and-the-opioid-crisis-dr-bransfield/

https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/  Besides suicides, Bransfield estimates around 14,000 incidents of self-harm and 31,000 suicide attempts may be attributed to Lyme and associated diseases each year. https://www.usatoday.com/story/news/nation-now/2017/07/19/how-lyme-disease-might-triggering-hundreds-suicides/493934001/ “It’s a constant action that comes up and isn’t adequately addressed in the scientific literature,” Bransfield said. “… Failure to adequately diagnose, failure to adequately treat and the progression of the disease over a span of many years often leads to suicide.”

Bransfield also points out that in his experience:  Suicidality seen in LAD contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms which are possibly intensified by negative attitudes about LAD from others.

Negative attitudes about LAD abound due to the top down handling of of it.  When those who are supposed to be protecting public heath and who also control the narrative used by treating physicians state you are clearly crazy and NOT sick, the trickle down theory effectively labels you as a nut-job more needing of a psych med or pain killer than life-saving antimicrobials.

There is a problem and it’s not in Houston – it’s within in the CDC.

For more on the Lyme Caucus:  https://madisonarealymesupportgroup.com/2017/09/22/calling-all-wisconsinites/

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.

 

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.

Removing Parasites to Fix Lyme & Chronic Illnesses – Dr. Jay Davidson

http://drjaydavidson.com/removing-parasites-fix-lyme/  Sept. 2017

REMOVING PARASITES TO FIX LYME AND CHRONIC ILLNESSES
by Dr. Jay Davidson

Article Summary

  • Parasites are more common than you might think. About 50% of the western world has parasites. Importantly, parasites can play a part in almost every common illness, and they can prevent the effective treatment of chronic disease.
  • Parasites can range from microscopic creatures, to huge tapeworms. Anyone can be affected by parasites, but there are some patients, such as those with poor immune systems and Lyme sufferers, who are more risk-prone.
  • The symptoms of parasites and Lyme are often very similar. It may be easy for many people to overlook the presence of a parasite in their body. Common symptoms range from insomnia and bruxism, to anemia, skin conditions, and more.
  • Parasites and Lyme disease go hand in hand. When parasites are within your system, it is impossible to remove Lyme. Some studies have even found that parasites can protect the bacteria of Lyme inside themselves.
  • Treating parasites can also mean treating chronic illness. Often, treatment for parasitic infections will begin with a careful consideration of diet. Make sure to remove grains, sugars, and pork from your diet. You should also consider adding substances like garlic, diatomaceous earth, and coconut oil.
  • One of the most powerful treatments for Lyme and parasites is Mimosa Pudica. This substance paralyzes parasites and flushes them from the system.
  • Management for parasite die-off will be necessary during a cleanse. Removing Lyme and parasites from your body can be an exhausting process.

DO YOU HAVE PARASITES?

It is difficult to think that there might be parasites crawling around inside you. The concept is nerve-wracking, and just plain disgusting. Experts believe that more than 50% of people in the Western world will suffer from a parasitic infection in their lifetime. It is easy to understand why this is the case when the human body is crawling with bacteria. The digestive tract holds more than three pounds of bacteria alone.

Although some bacteria can be good for your body, improving nutrient absorption and digestion, other bacteria can be devastating. When the bacteria in your system gets out of balance it creates a perfect place for parasites to thrive.

Parasites can enter your body in many ways and eating lot of fructose and glucose feeds the parasites helping them multiply. Pharmaceuticals, such as antibiotics, can also deplete the digestion system of bacteria and encourage parasitic growth.

For people with chronic Lyme, the problem is that they may not know they have a parasitic infection. This can mean that you are attempting to rid the body of disease while the parasites inside you are still acting as a host for Lyme disease itself. Researchers believe that parasites could play a part in every common illness. If you want to get rid of a chronic disease, you need to start by killing parasites.

The first step, of course, is recognizing that you have parasites in your body. The disturbing truth is that you probably do. Studies indicate that most people have parasites – especially those with chronic illnesses like Lyme.

The Symptoms of Parasites: What to Watch For

Remove-Parasite-Lyme-2

Parasites are complex creatures. Almost always associated with inflammatory diseases, including chronic Lyme, they actively prevent good health. A parasitic infection can range all the way from tiny microscopic organisms, to tapeworms that are several feet long. A parasite can enter your body through water, food, or even just skin contact.

The key thing to remember is that anyone can have a parasites. These creatures are not just common for impoverished countries and unhygienic environments. Parasites are a common all over the world, including the United States.There are factors that can mean you have a greater level of risk.

Factors that can increase your risk of parasite infection include:

  • You frequently swallow water from ponds, lakes, rivers, or other unhygienic sources.
  • Your immune system is compromised, perhaps because you’re suffering from chronic Lyme.
  • You work in a medical environment that might include direct contact with feces and bodily fluids
  • You travel frequently to tropical regions where parasitic infections are more common.

The symptoms involved with parasitic infections are varied. Many involve skin problems, such as hives, rashes, eczema, and psoriasis. According to Parasite expert, Dr. Todd Watts, one of the most common problems links back to trouble sleeping. Many of his patients suffer from insomnia and “bruxism”.

Bruxism, or the grinding of teeth, can happen because parasites are more active at night. Additionally, parasites can also be responsible for anemia and blood sugar problems. Before you begin treating your parasites, you may need to come to terms with some of the common symptoms. For chronic Lyme sufferers, pinpointing symptoms can be particularly difficult. Lyme symptoms and the signs of parasites are often very similar.

Some signs that you may have a parasitic problem include:

  • Insomnia, consistent fatigue, and poor sleeping habits
  • Lowered immune systems, the appearance of new allergies, and constant illness
  • Rashes, itching, and skin problems such as sores, or eczema and Psoriasis
  • Mental problems such as brain fog, anxiety, or depression
    Food cravings
  • Joint and muscle pains
  • Eye spots or difficulties with sight
  • Anemia, low blood sugar, or adrenal fatigue
    Parasites and Chronic Lyme Disease

It is an uncomfortable truth that the human body is crawling with hundreds of strains of bacteria. When properly balanced, the right bacteria can be beneficial. However, when bacteria falls out of balance, problems begin to occur. In chronic Lyme disease patients, imbalance is a significant problem. Ongoing inflammation within the body, and issues with the immune system can throw the entire system into chaos.

In many circumstances, parasites enter the body because we create the ideal environment for them. With a compromised immune system from Lyme disease, consistent gut problems, and exposure to various chemicals, we are welcoming parasites in. Experts, like Dr. Watts, believe that to overcome chronic infections such as Lyme, we need to first address parasites.

Interestingly, it is also worth noting that some parasites can house Lyme disease. In other words, if you do not remove the parasites from your system before treatment, you’ll still have protected Lyme bacteria in your system living inside of the parasites. One study, which examined the brain tissue of patients who died due to serious neurological conditions, revealed that Lyme can thrive within nematoid worms.  https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/, and https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/

Without a protocol that takes parasites into consideration, treatments for Lyme disease may be temporary, or completely ineffective. While it is possible that treatments that do not engage parasites might lead to some improvements in your symptoms, many problems will remain or return later on. This is because parasites allow Lyme disease to persist within the body, inside the parasites, even after treatment.

On top of the problems that parasites impose when it comes to Lyme, they also cause a range of problems in general with your health. Simply ignoring the presence of parasites in your body could mean overlooking solutions that could allow you to achieve optimum health.

Treating Parasitic Infections to Treat Chronic Illness

Treatment for parasitic infection can come in numerous forms. There are a range of natural treatments that can help to eliminate parasites and prepare the body for better health. Most of the time the best solutions for parasitic infections involve changing your diet and using the right supplement at the right time.

People suffering from parasitic problems in combination with Lyme can make the problem worse by consuming sugars. It is often recommended that you remove all sugars and grains from your diet during a parasitic removal so you are not feeding the parasites as you try to eliminate them. Dairy can also present problems for some patients, although you should seek out guidance from a professional.

Natural Solutions For Parasites:

Just as there are foods that can worsen parasitic infections, there are other foods that can help your circumstances. For instance, pumpkin seeds help to fight off parasitic infections. There are also a range of other solutions that are commonly recommended, including:

Garlic: Garlic can be a powerful solution when removing yeast and parasites. It is a natural source of health-boosting nutrients. To use garlic, simply mince two cloves into a glass of water.
Cinnamon: Cinnamon can be a fantastic remedy for a range of different illnesses. Cinnamon can break down a parasite infestation and kill fungus in the body.
Vitamin C: Vitamin C is wonderful for boosting your immune system. While fighting Lyme disease, Vitamin C can give your body the antioxidants it needs to thrive. For the purpose of parasite removal, it is best to take around 5,000mg per day.
Coconut oil: Coconut oil is a naturally nourishing anti-fungal substance. You can consume coconut oil throughout the day to support parasitic removal and soothe your gut.
Apple cider Vinegar: A rich source of B-vitamins, apple cider vinegar is useful for neutralizing the pH in your gut, which can help to make the intestines healthier. By boosting your microbiome health, you can improve digestion, and remove parasites at the same time.
Diatomaceous Earth: Effective at killing parasitic eggs, and parasites, Diatomaceous earth is great for improving your digestive tract.

Natural solutions

Foods To Avoid:
Banishing parasitic infections is a complicated process. Generally, you’ll need to focus on introducing positive substances into your diet, while removing dangerous substances. There are some foods that will naturally help parasites to thrive. Since your aim will be to remove parasites at all costs, stay away from:

Pork: Pork is one of the most common sources of parasites. Because pigs consume and process food differently to humans, there are toxins present within the flesh of the animal. It is crucial to avoid pork when cleansing your body of parasites.
Grains: Wheat and many other grains containing gluten can quickly break down into sugar. Sugar not only feeds parasites, but also leads to intestinal inflammation.
Processed foods: Processed foods are bad for your health because they contain a lack of nutrition. However, it is worth noting that these foods also contain a great deal of sugar.
Alcohol: Alcohol impairs the immune system and many other elements in the body. To improve your body functioning during a parasite cleanse, avoid alcohol.
Sugar: Sugar reduces the functioning of the immune system, and feeds parasites.

MIMOSA PUDICA AND KILLING PARASITES
One of the best treatment solutions for removing parasites is a Mimosa Pudica (Para 1) protocol. The best supplier of premier, fat soluble, additive free Mimosa Pudica, is Microbe Formulas. Importantly, while there are other Mimosa Pudica options on the market, the Organic Mimosa Pudica offered by Microbe Formulas is the most pure form for treating parasitic infections.  https://microbeformulas.com/collections/frontpage/products/microbe-formulas-mimosa-pudica

Mimosa Pudica actively paralyzes parasites and forces them to fall away from their position on intestine walls. This means that parasites can be effectively flushed from your system.

With Mimosa Pudica, patients have seen huge improvements in their lives, thanks to the removal of parasitic infections. The good news about this substance, is that it is a powerful tool to include in any parasite protocol. This means that regardless of what your parasitic treatment includes, Mimosa Pudica (Para 1) could enhance your protocol.

The system fits into every GI and GAP protocol, because it helps to create a healthier gut microbiome. To make the gut system more effective, it is crucial to get all the mucus, parasites, and other dangerous substances out of your stomach and intestines. Whether mucoid plaque or parasites, you need to begin by clearing out your microbiome.

Mimosa Pudica supplements should be used for at least six months. The supplement mentioned above is particularly effective because it plays multiple parts in recovery. Not only does it bind the toxins in the body, but it also repairs cell membranes. On top of that, it delivers positive nutrients into the blood and digestive system.

Importantly, if you are considering using Mimosa Pudica, you will need to deal with issues of constipation first. If you’re struggling to pass bowel movements, this can be a serious problem for any parasite or detox program. Although the substance itself can cause a little constipation at first by releasing things throughout the body, it is important for patients to manage their bowel movements. Make sure that you use enemas, magnesium, and frequent water consumption to push your bowel movements through.

Managing Parasite Die-Off
As we bring this conversation about parasites and Lyme disease to a close, one important thing to mention is parasite die-off. Crucially, as you move forward with your parasite cleanse, you may notice that you begin to suffer from a range of symptoms caused by the death of parasites in your system.

Regardless of the cleanse you choose, the process of removing parasites and Lyme from your body is exhausting. It is crucial to make sure that you get plenty of rest. Sometimes its best to take some time off of work if possible to reduce stress and recover faster. On the other hand, you might consider using a gentler cleanse to help acclimatize your body. Some of the symptoms you might expect during die-off include:

Headaches: Pain and headaches are common with parasite die-off. Sometimes, these pains are a result of a change in your internal environment. In some cases, headaches can also be a result of parasites moving around in your head.
Crawling sensations: A parasite cleanse is an uncomfortable experience for your unwanted guests. This means that the parasites might begin to move around in your body. The truth is that many patients will not be able to feel this movement. However, you may convince yourself that you can notice a crawling sensation.
Issues with digestion: When parasites are living in your body, digestive problems are common. In some cases, as you begin to rid the parasites from your body, you might find that the symptoms appear to get worse. You may experience issues like diarrhea and bloating as your body eliminates toxins.
Skin sores: As mentioned above, skin problems are a symptom of parasites. However, sores can also occur when the body tries to remove toxins and parasites too fast. The skin can suffer from breakages and sores over time.
Problems with emotional stability: Parasites thrive on your nutritional income. A parasite can also steal away the nutrients and minerals that you need to enjoy good mental health. You might struggle from periods of anxiety and depression during die-off.
Cravings: As mentioned above, parasites thrive on sugars and other types of food. It is important to remove these foods from your diet during a parasite cleanse. However, doing so could leave you with specific cravings. Make sure that you do not give in to them!
Respiratory effects: Killing parasites in the body can mean that your system takes drastic measures to rid you of the infection. Increasing the flow of mucous is a common way to respond to contaminants. There’s a chance that you’ll experience respiratory symptoms similar to the common cold.
Frequent bruising: When parasites begin to feel threatened, they can move around. Sometimes, the restlessness of parasites in your body can cause them to move closer to the skin. When this happens, you might find that you see more bruises on your body.
Ultimately, it is fair to say that removing parasites from your body can be a difficult and uncomfortable process. However, if you want to overcome Lyme for good, it is essential to start by killing parasites.

If you leave parasites unattended in your body, they can contribute to a range of illnesses and diseases, including chronic Lyme. On top of that, it is simply impossible to live in good health with a buildup of parasites in your body.

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More on Parasite treatment:  https://www.betterhealthguy.com/a-deep-look-beyond-lyme

http://www.klinghardtacademy.com/images/stories/parasite_treatment/Parasite_Treatment_Basic_Step_9_2013.pdf

Dr. D. KLINGHARDT PROTOCOL – To be used only under the direct supervision of qualified medical practitioners.  
(systemic parasite medications)

The following represents only PART of Dr. K.’s protocol. Other herbs and therapies comprise the complete protocol. They can be found in the “A Deep Look Beyond Lyme” in the note book. That information is from 2011 and is being updated as Dr. K and other physicians learn more.

The following drugs are used for a year in rotation to kill parasites.

1. Biltricide 600 mg – twice daily (q. 12 hours) for two days
Absorption increases most when taken with a high carb meal. A high fat meal increases it almost as much. Take with grapefruit juice to increase absorption also.

2. Ivermectin 12 mg – one 12 mg (or four 3 mg) tablet(s) four times per day for fourteen days (take at the same time as Pyrantel Pamoate) on an EMPTY stomach.
Pyrantel pamoate (liquid – 4 teaspoons) 1000 mg per day at bedtime for fourteen days.

3. Albenza 400 mg – Two 200 mg tablets twice per day for fourteen days (after completing fourteen days on Ivermectin and Pyrantel). Take with food. (every 12 hours)

4. Alinia 1000 mg – Two 500 mg tablets twice per day for fourteen days (after completing Albenza) every 12 hours

(A’s addition from Dr. Clark’s Book – Levimasole 100 mg (3 times/day) before meals)

THEN 2 HERBS:

5. Mimosa Pudica (Biopure) – ½ teaspoon 2x/day for fourteen days mixed drink, milk or juice

6. Arteminisin (Biopure) – 200mgs 2x/day for fourteen days.
ALWAYS take with 4 oz. of grapefruit juice 30 minutes before meals.

REPEAT ENTIRE SEQUENCE 4 TIMES.

https://madisonarealymesupportgroup.com/2017/03/23/rebecca-keith-on-mcas-parasites-lymemsids/  Nurse practitioner Rebecca Keith on Parasites and MCAS.

For another take please read this by Susan Luschas, PhD, and mom who has done a lot of footwork for her family:  http://www.debugyourhealth.com/parasites-in-humans/#Kalcker-Protocol

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“Dr. Klinghardt has suggested that when it comes to parasites, this is where some of the pharmaceutical options really shine and are often necessary.” –Quote from Better Health Guy.com. Our family had to learn this the very hard way (See 5 years and thousands of dollars in the previous section).

I no longer believe that you can get rid of parasites in humans without prescription medications. If I could do it all over again, here is a list of what I would do, in order from first to last:

Enemas to get a head start on worms
Kalcker Protocol for worms   http://www.debugyourhealth.com/parasites-in-humans/#Kalcker-Protocol
Additional Parasite Medications for flukes, protozoans, and more worms  http://www.debugyourhealth.com/parasites-in-humans/#Parasite-Medication-For-Humans
Gallbladder Liver Flush & Massage to flush out the dead ones
Suppositories if itchy bum

http://www.preventionandhealing.com/articles/Parasites_Often_Hidden_and_Undiagnosed.pdf  and http://www.preventionandhealing.com/articles/Lyme-Disease-Autism-and-Beyond.pdf  Excellent articles, both by Dr. Simon Yu, M.D.

http://www.wormbook.org/chapters/www_anthelminticdrugs/anthelminticdrugs.html  Here we learn an inconvenient truth about nearly ALL coinfections including nematodes: Despite the prevalence of parasitic worms, anthelmintic drug discovery is the poor relation of the pharmaceutical industry. The simple reason is that the nations which suffer most from these tropical diseases have little money to invest in drug discovery or therapy. It comes as no surprise therefore that the drugs available for human treatment were first developed as veterinary medicines. There is thus a pitifully small repertoire of chemotherapeutic agents available for treatment (see Table 1). In some respects, this situation has been exacerbated by the remarkable success of ivermectin over the last twenty years (Geary, 2005), which has decreased motivation for anthelmintic drug discovery programmes (Geary, Sangster and Thompson, 1999). This prompts concern, as anthelmintic resistance has been widely reported in livestock and it may also only be a matter of time before this phenomenon occurs in parasites of humans.

The drug industry just isn’t attracted to these pathogens.  Frankly, treatment is in the stone ages on all things TBI.

For more on detoxing:  https://madisonarealymesupportgroup.com/2015/12/06/tips-for-newbies/

https://madisonarealymesupportgroup.com/2015/08/15/herxheimer-die-off-reaction-explained/

https://madisonarealymesupportgroup.com/2017/06/28/jarisch-herxheimer-a-review/

https://madisonarealymesupportgroup.com/2017/09/29/epsom-salts-for-lymemsids/

 

 

Treat the Infection, Psychiatric Symptoms Get Better

It has long been a belief of mine that pathogen involvement should be considered with psychiatric issues, particularly with Lyme/MSIDS.  I came to this conclusion after watching my husband battle with anxiety, depression, memory loss, rage, sudden crying spells, fear of abandonment, and other bizarre symptoms https://madisonarealymesupportgroup.com/2015/09/16/bizarre-symptoms-msids/ which were completely new and out of the blue, while we were in treatment for Lyme/MSIDS.  Upon further reading and talking to other patients, I became convinced.

The following article adds further credence to this idea:  http://www.ijporlonline.com/article/S0165-5876(16)30380-9/fulltext

While this study is not a randomized clinical trial, it reveals improvement of psychiatric symptoms when concurrent sinusitis was treated and resolved.  

Treatment was amoxicillin & clavulanic acid.  A few received  clindamycin or azithromycin, all of which are common antibiotics for Lyme/MSIDS and other infections.

The conclusion of the study stated that there is mounting evidence that inflammation and/or infection can affect neuropsychiatric health.

This has been reported before by a prominent LLMD.

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

LLMD, Dr. Horowtiz, goes on record stating that antibiotics are effective in Schizophrenia. With irony he points out that the authors attribute the reason minocycline helped these patients is due to its ability to affect glutamate pathways in the CNS, blocking nitric oxide-induced neurotoxicity, and inflammation in the brain. He reminds them that minocycline is a tetracycline antibiotic that very well may be treating an infection. He also emphatically states that he has had several schizophrenic patients test positive for Bb, the agent of Lyme Disease. After taking doxycycline they improved significantly and with the help of their psychiatrist, were able to reduce and in some cases eliminate all of their antipsychotic medication. It is important to note that patients remained stable on antibiotics but their symptoms returned if they stopped treatment. He says a doctor should suspect MSIDS in psychiatric patients if they have a symptom complex that has good and bad days with associated fevers, sweats and chills, fatigue, migratory joint and muscle pain, migratory neuralgias with tingling, numbness and burning sensations, a stiff neck and headache, memory and concentration problems, sleep disorders with associated psychiatric symptoms.
Horowtiz also reports the work of psychiatrist Dr. Brian Fallon who has linked Lyme Disease to paranoia, thought disorders, delusions with psychosis, schizophrenia, with or without visual, auditory or olfactory hallucinations, depression, panic attacks and anxiety, obsessive compulsive disorder, anorexia, mood lability with violent outbursts, mania, personality changes, catatonia, dementia, atypical bipolar disorder, depersonalization/derealization, conversion disorders, somatization disorders, atypical psychoses, schizoaffective disorder and intermittent explosive disorders. In children and adolescents MSIDS can mimic Specific or Pervasive Developmental Delays, Attention-Deficit Disorder (Inattentive subtype), oppositional defiant disorder and mood disorders, obsessive compulsive disorder, anorexia, Tourette’s syndrome, and pseudo-psychotic disorders.

Minocycline has also been found to help MS:  https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/

For patients with psychiatric issues, it’s important to rule out infections as players, unfortunately, that’s often nearly impossible for Lyme/MSIDS as the testing is so poor.  ALL doctors need to become more educated on tick borne illness and its ability to cause and/or exacerbate psychiatric and cognitive issues.  Hopefully, long gone are the days where Lyme/MSIDS is considered a mild dermatological disease with some joint involvement and fatigue.

This stuff can put you in the psych ward.

For more:  https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/

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

 

 

 

 

PANS/PANDAS, Steroids, Autoimmune Disease, Lyme/MSIDS, & the Need For Medical Collaboration

http://www.neurosciencechicago.com/pans-and-pandas-in-pediatric-diagnostics/  The Neuroscience Center

PANS and PANDAS in Pediatric Diagnostics

PANS is a relatively new term used to describe acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

PANS & PANDAS is used to describe the group of children and adolescents who have sudden onset of Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following conditions such as streptococcal infection (Strep throat & Scarlet Fever), influenza, chickenpox, Lyme disease, and mycoplasma (which causes so-called walking pneumonia). The illness can become a psychiatric emergency within 48 hours, and should be treated by a Pediatrician (or other primary care physician) along with a Psychiatrist.

Currently, the illness is conceptualized as an example of mis-directed immune attack, and might occur because of a kind of similarity between antigens on the viral or bacterial agent and childs own cells – so the body begins to attack itself.

Both PANS and PANDAS are clinical diagnoses. They are made by a physician after clinical evaluation. The history must reveal an abrupt onset of OCD and/or tics (or sudden, dramatic worsening if the child had pre-existing OCD or tics). Laboratory testing will not confirm or negate the diagnosis. Testing can suggest different routes of acute and/or long-term treatment – relevant tests include anti-streptococcal antibody titers, anti-nuclear antibody titers, and a test of immune reactivity, such as an erythrocyte sedimentation rate (ESR) or C-reactive protein.

The primary care physician will likely prescribe antibiotics, nutritional support, and perhaps steroids. Sometimes, IVIG (immunoglobulins administered by IV) or plasmapheresis (a way of purifying blood and then replacing it into the patient). Hyperbaric Oxygen Therapy is occasionally useful to restore physiologic resilience and aid in stabilizing immune dysfunction. Psychiatric care will likely include traditional anti-OCD interventions such as medication.

____________________________________________________________________________________________

Great, concise information.  A warning; however, about steroids if pathogens are involved as certain steroids (catabolic) can suppress the immune system, allowing infection to proliferate and worsen.  This has happened to many a Lyme/MSIDS patient when they were misdiagnosed initially with things like fibromyalgia, MS, and other autoimmune conditions and given catabolic steroids such as prednisone or cortisone.  https://www.verywell.com/anabolic-steroids-corticosteroids-difference-190456

Not all steroids do this and it’s important not to take a broad brush stroke condemning all when some actually build the body up (anabolic) as well as the fact patients may even require small doses of catabolic steroids such as cortisol if they aren’t making enough.  Blood tests are often used along with a clinical diagnosis to determine these imbalances. http://www.hormone.org/diseases-andconditions/adrenal/adrenal-insufficiency

So type of steroid is important as well as dose.

Nothing’s ever simple, is it?

And to confuse things even more

                  HLN, Published 2012, Approx. 8 min.

What if an apparently normal, intelligent and productive person suddenly became psychotic, violent and unstable? Susannah Cahalan, tells her frightening story in the book Brain on Fire: My Month of Madness.

In this case, Cahalan was finally diagnosed after the doctor had her draw a clock, a common test for Alzheimer’s patients.  When she drew it, all the numbers were on the right side, demonstrating that the right side of her brain was not functioning as well as the fact her problem was neurological not psychiatric.  She was found to have autoimmune encephalitis and the treatment is very high doses of steroids which suppress the immune system as well as IVIG, a blood product prepared from the serum of between 1,000 and 15,000 donors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/, and plasmapherisis, a plasma exchange to rid the body of abnormal antibodies http://plasmapheresis.net.

  Her doctor, then Staten Island surgeon, Dr. Najjar, speaks here about the professional isolation he felt due to the lack of collaboration between the disciplines of psychiatry and neurology.

This problem also exists for Lyme/MSIDS and must change.

 Boy’s Lyme Disease Morphs into Autoimmune encephalopathy.  It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain.  Dr. Souhel Najjar, Cahalan’s doctor, heroically saves the day again.

  (Trailer  here)  Zero Media  Published 2017.

These stories are critical to share and with today’s technology we can do this easily.  Please pass this on to every parent you know as it may save another life.

For more on psychiatric Lyme/MSIDS: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2017/07/26/can-lyme-steal-your-mind/

 

Should I Tell My Employer – I have Lyme Disease?

https://globallymealliance.org/howwhen-should-i-tell-my-employer-i-have-lyme-disease/  by Jennifer Crystal

THE CHRONIC ILLNESS CONUNDRUM. WHEN PERSONAL ISSUES ENTER THE WORKPLACE.

One of the many factors that led to my 2007 relapse was a huge research project I was doing for the magazine I was working for at the time. The incredible amount of energy and brain power that I put into the project caused my neurological symptoms to flare, until I was physically and mentally overwhelmed. My doctor suggested I take a week or two off work while I restarted antibiotics.

“But my editor doesn’t know I have Lyme,” I replied sheepishly.

“Why not?” he asked.

“I didn’t want her to think I’m not capable of doing my job.”

My decision to be secretive was born of fear: I was afraid of being judged, afraid of being defined by my illness, afraid of being seen as unreliable, afraid of losing the job I needed to help pay my medical bills. The irony was that by not telling my boss the truth about my health—and my limitations—I had worked myself into a situation in which  I was incapable of doing my job.

Angst over when or if to tell an employer about one’s illness is a common and scary struggle for patients of any chronic malady. It’s especially tricky with a relapsing disease like Lyme, which can flare, and impact work ability, without warning.

I was lucky because I worked from home. I set my own hours, so as long as I met my deadlines, it didn’t matter what time of day I did my work. I could write and edit articles from my couch, in my pajamas, and my boss was none the wiser. I napped in the afternoon and no one knew.

Not everyone has the same flexibility. Some Lyme patients find themselves struggling to look alive from nine to five, wishing they could curl up under their desks. They come home exhausted, unable to do anything but sleep.

The flexibility of my job, however, had its downsides.  I was paid by the hour. It was easy to forego social plans in favor of doing another couple hours of research. I lost my sense of work-life balance. How could I give myself downtime if I could be doing work and making money? The more hours I put in, the more money I made; the more money I made, the smaller the medical bills became, but the larger the medical issues grew.

After restarting antibiotics, I had such a bad Herxheimer reaction that I became bedridden and incapacitated. I couldn’t perform the daily tasks of living, let alone the duties of my job. I had no choice but to tell my boss the truth.

As I hesitantly explained my situation to her over the phone, she stopped me and said, “Oh, I knew you had Lyme…I read that article you wrote about it.” After attending my college roommate’s wedding in Florida in 2006—just as I went into remission—I’d written a piece about that experience for our college alumni magazine. I’d forgotten that my editor had gone to the same college, and received the publication. “I remembered that piece and have been so amazed with how much work you’ve been able to do in spite of all you’ve been through,” she said.

She offered to have me slow down for a few weeks, and when even that was too much, she hired a temp to cover me for a month. She didn’t sound annoyed, or frustrated, or put out, or any of the negative reactions which I’d imagined. Instead she said, “You are a critical part of this operation. I want to work with you through this. Just tell me how I can best help you and respect your needs.”

Had I been upfront with my boss in the first place, I would have saved myself the stress and anguish that contributed to my relapse.

It goes without saying that not everyone has such an understanding boss. Not everyone is able to take time off without jeopardizing their career, and not everyone can remain financially afloat if they do take a leave of absence. Many Lyme patients are the chief breadwinners for their families. In addition to their paychecks, they desperately need the health insurance their job provides, even though the work itself can lead to a relapse of the illness that requires insurance coverage in the first place.

It’s quite a conundrum, with no set answer.

One thing that is true across the board, though, is that Lyme sufferers and other patients of chronic illness are not in these difficult positions by choice. When I expressed to my doctor my concerns about telling my boss about Lyme, he said, “Having Lyme isn’t anything to be ashamed of. It’s not like a secret addiction or something you did to yourself. You were bitten by a tick—it could have happened to anyone. I think, if anything, your boss should be impressed that you’ve been able to do so much while managing this illness.”

He was right! Lyme disease wasn’t my fault. It wasn’t anything to feel guilty or embarrassed about. A good boss will understand that.

Ultimately I had to quit my job at the magazine. Unable to care for myself or pay my bills, I moved back in with my parents at 28- years of age. I was very lucky to have their help, but the move was a blow to my independence and my pride.

I kept my doctor’s words in mind, though, as I wrestled myself back into remission. Once I was well enough to work again, I understood the process, slowly, first volunteering, then taking on small freelance projects. I also reevaluated my interests and capabilities. I knew I couldn’t work in a pressured editorial position again, and I knew I couldn’t keep a traditional schedule. So what could I do? What was I passionate about? What was a career that offered a more flexible schedule?

My readers know the answer: I channeled my medical experiences into writing and teaching, et voilà, here I am penning this post. Do I still have fears that I’ll relapse and not be able to keep my commitments? Of course. But I’m upfront with my colleagues. And, most importantly, I’m upfront with myself about my limitations, and that honesty has made me capable of more than I ever could have imagined.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

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**Comment**

I stand in amazement at patients who are able to continue to slog through work while in treatment.  For those of you who do, please take this article to heart.  You are in-between a rock and a hard place for sure, no question.

I’m thankful that more workplaces are becoming more flexible allowing people to work from home or have flexible hours.  Chronically ill people need this flexibility.

The other issue that begs to be pointed out is the importance of educating others about this disease(s) as chances are they too will experience it personally or with someone they know.  By sharing your experiences, you will inadvertently be educating more people and since mainstream medicine still has its head in the sand, if we want others to be informed, we have to do it.