Grass Roots Efforts

I have started reading Malcolm Gladwell's book, David and Goliath. It begins by describing the biblical story of the shepherd boy, David, taking on the challenge of the giant Goliath. Gladwell then dissects the hypothetical reasons that led David to beat the odds with a simple slingshot. According to Gladwell, the fight wasn't just between strong and weak, but between overconfident/possibly medically disabled (Goliath) and cunning/different type of fighter (David.) David defeated Goliath because he didn't fight in a way that was expected.

And really, David had everything to lose by fighting Goliath in hand-to-hand combat. David had nothing more to lose by using his simple slingshot. Everyone already expected David to succumb.

There are lessons here for us. How do we use this knowledge as we involve ourselves in efforts to take PANDAS legislation to the state and national levels? How can we learn from the successes and defeats of Lyme and Autism warriors who have attempted to do the same? How do we become a different type of fighter? 

I'm not a politician. I'm a teacher, a writer, and most importantly, a mom. A mom of two children who both have Lyme Disease. A mom who has Lyme Disease. A mom of a son with PANS/PANDAS. And a wife to a husband who contends with his own autoimmune disease. I want to badly to effect change, but I am just one person, and one without a resevoir of energy. Many of us are in simlar positions. And that's why we need each other.

In Massachusetts, parents have united to push for legislation that will enable children suffering from PANS to receive IVIG. In Hartford, Connecticut, doctors, school nurses and parents are participating in a PANDAS Advisory Council to create legislation that will aid in PANDAS/PANS awareness across the state. I am hoping to pull together a core of people who can continue efforts in the state of New York. 

Even as a PANS/PANDAS community, we are often divided. Some PANDAS doctors or scientists have quite stringent qualifications for PANDAS, wherein you must know the exact day and hour that your child flipped. Other doctors have hypothesized that PANDAS can look quite differently depending upon the age of the child at onset. Some kids with PANDAS also have Lyme. Some don't.

At the PANDAS conference in November, one of our doctors (I believe it might have been Dr. Jones,) said that we need to be "lumpers, not splitters." No matter the age of onset, no matter the symptoms, no matter the diagnosis, we must work together. How do we put aside our differences in order to fight for more PANDAS and Lyme awareness, for legislation to protect our doctors and funding for proper treatments?

As Lumpers, we need to align ourselves with other people who suffer at the hands of our medical system because of misunderstandings and lack of information. The case of Justina Pelletier is just one devastating example of this. Another example of a misunderstood disease is Anti-NMDA receptor encephalitis, which is the subject of Susannah Cahalan's book Brain on Fire.

And without being too political, because I haven't had the time or energy to read up on the changes in health care laws, how will Obamacare affect those of us with oft-misdiagnosed or misunderstood, under-researched diseases? Already, insurance doesn't cover many of our medical bills. Will this get better in future years...or worse?

Battling the medical system head-on might not be the answer. Too many doctors do not yet acknowledge PANDAS. Others refer to it as a "rare disease." Dr. Susan Swedo made headway for PANDAS in her debate with the American Academy of Pediatrics this year. But she's one person. There are many of us parents out here. And time is ticking by.

For years, people suffering from Lyme Disease have struggled with the CDC which, until this year, maintained that only 30,000 people a year in the USA get Lyme. (This year, they acknowledged that 10 TIMES that number of people get Lyme annually. The real number is most likely much greater than that.)

One thing that everyone can do is to support journalists like Neil Swidey (Boston Globe,) Beau Berman (Fox News) and Mary Beth Pfeiffer (Poughkeepsie Journal,) who bravely expose the stories of these invisible diseases.

Perhaps we are outliers of society, those of us who must deal with these diseases. My son nicknamed those of us who are sick, "Immortals," (vs. Mortals,) citing the Greek gods of long ago. 

Back to Malcolm Gladwell. Perhaps, in our struggles with these illnesses, we outliers. According to Gladwell, outliers can be successful people. Like David, we need to empower ourselves. We need laws that will guarantee medical legal rights for our families. We need to find our weapon of choice. We need to find a united voice.

This is a fight worthy of our time and effort. What is needed for success? A slingshot. Guerilla tactics. A smarter way.

Help wanted. The time is now.

You've Got Mail...I Mean Lyme

I am driving down the road, nervously glancing around for a gas station. My gas mileage meter shows that only have enough gas for 1 more mile. I think I see one of those gas stations/food marts up ahead to the left. Will I have enough gas to get there?

I wake up. Phew. Just a dream.

You'd never know it to look at me. I don't show my symptoms. But I have Lyme Disease. I'm finally starting to believe it. Accept it.

Hate it.

It's taken a while for it to truly sink in. How are others supposed to believe it if I don't? Sure, my tests came back CDC positive. What that means to me is that my immune system is strong enough to create antibodies. My daughter's test is also CDC positive. My son, who is by far the sickest, vacillates between negative tests and tests with just a few bands. Whatever. We know that much of the testing is worthless anyway. Lyme doesn't like to linger in the blood when all that juicy tissue provides a much better hiding place.

Not only that, but my doctor and a few well-intentioned people have mentioned that some of my symptoms could be indicative of Bartonella, which often appears as negative on blood tests. Hmmm. I've suspected that my son has had Bartonella. Could I have so lovingly passed this on to him? And if that's the case, might my daughter also have it?

Hmmm. If I truly have this disease, if I don't have a false positive diagnosis, if my fatigue isn't due to 1. my age or 2. all the things I do; if my anxiety isn't just due to 1. my son being so incredibly ill for 4 years or 2. the difficulties his school system has thrown in our way; if my forgetting isn't due to 1. hormones/age, then I have the most insidious disease possible.

Because, except for being tired (and for that I blamed trying to do too much and the mononucleosis I had when I was 20,) I wasn't aware that anything outside of myself was causing the turmoil I felt inside of myself. I'm a problem-solver and I always look first to myself as being...well, the problem! 

But this stuff isn't fixable by just controlling emotions or dealing with them. This is real. It's medical. And it's deadly, if left undisturbed.

So I'm shaking it up. I'm treating it. Which is shaking ME up more.

Since going on the Byron White, Serrapeptase, etc., I'm not as lethargic in the morning. I'm not as dizzy. I realize now that what I've perceived as fatigue has sometimes been dizziness.

But now I'm getting headaches. Oh gads, my hair is hurting. And I get foot cramps that wake me up in the middle of the night and can't be massaged away. Good times, good times. But here's the worst one for you: I'm bewitched.

Oh, how I wish I could cast magic spells. I wiggle my nose and wiggle my nose but I can't wish this wiggle away. And I used to think it was funny that I could reinact a bunny rabbit. When I chose to. I don't choose to have a tic that feels like an itch. Yikes.

Maybe everything I ever believed about myself is different from reality. 

Joint pain? Don't have it. My son does, though. But maybe...those running pains really were due to Lyme? 

Antibiotics...I'm allergic. Have been for 20 years, beginning with Biaxin. But maybe...all those rashes and hives were herxes?

Eating disorder in my late teens/20s? Compulsions? Was this due to my childhood? Environmental? Or caused by untreated Lyme Disease? Who the heck knows?

Maybe I am someone other than the person I believed myself to be. I grew up with beautiful Connecticut woods on two sides of my yard. I played outside all day, made forts in the woods, climbed trees, came into the house and stood still for my mother so she could remove ticks.   

So, I have Lyme. I have Lyme. Lyme. Lyme.  Say it ten times. But I'm strong, also, and can work, and am in much better shape than so many others who suffer from Lyme. When compared with my son, my Lyme doesn't manifest itself that intensely.

What does this mean? Rather than distance myself from those who have worse cases of Lyme, I need to be their voice too, somehow. I need to tell you that we have Lyme Disease and if left untreated, it can be terrifyingly debilitating. Protect yourself now from ticks. Before you're bitten as well.

Furthermore, after doing research, I no longer believe in false positives when it comes to Lyme testing. 

I need to let others know that you can't always tell when someone is sick. Because often, it's so far inside that you won't see it. Those of us who have pride and can continue to function in life tend to cover it up. Curse into a pillow. Hold our nose so it won't wiggle. Drink a cocktail at the holiday party. Stay at home and sleep. Persevere, albeit secretly. When it comes right down to it, most people don't want to know.

They just want you to smile for the camera. Until they come down with Lyme. Then they need help.

Top Ten Holiday Gifts for a PANDAS/PANS/Lyme Diseased Family

It's holiday, list-making and gift-giving time. Are you ready? Do you think you'll get everything you want? Imagine that you're going to a benefit for PANDAS and PANS diseases and/or Lyme Disease. You're attracted by the door prizes. You don that old pale blue tuxedo you had in the back of your closet or that slinky black dress that fit you ten pounds ago and slip out for the night, hoping to win big.

And in David Letterman fashion, we will list these backwards. Here they are:

10. An all-expense paid trip to the next PANS/PANDAS/Lyme Disease conference! You know you love it. It's like a big old family reunion-the kind you used to enjoy when you were a little kid. Everyone speaks the same language, everyone adores and accepts you there. There's no place like home.

9. Complimentary legal services to sue those doctors who accused you of Munchausen's by Proxy.

8. An introductory appointment with your favorite PANDAS/PANS or Lyme doctor, with NO waiting period!

7. A Year's Supply of....Supplements! Yes, you have it all...from probiotics to Buffered Vitamin C to Enhansa and Adrecor. Ladies and Gentlemen, this prize is worth in the megamillions.

6. PANDAS/PANS Summer Camp! Your child can swim with the dolphins, horseback ride across fields that are swept for ticks, swim in lakes that have been checked for germs. And meet other kids who are PANDAS survivors. You too, may swim with the dolphins unless you prefer to roll around with the panda bears.

5. PPEWS (Practically Perfect in Every Way School) for your child suffering from Lyme/PANS/PANDAS; PPEWS caters to your child's immune issues, attention deficits, sensory sensitivities and other learning/processing issues that improve or deteriorate depending upon your child's health. PPEWS guarantees that your child will be MORE than ready for any challenge he or she wishes to someday pursue. PPEWS teachers enthusiastically share their love of learning with your child. 

4. A brand-new house with doors, TVs, computers and glass that cannot be broken when a child is raging. Knives are automatically locked up with a push of a button. The bed is king-sized x 2 for those nights that your child has severe separation anxiety. 

3. Free meal service that caters to the dietary needs of each member of the family, free clean-up crew for all breakages and messes and, wait!--there's more! FREE Health Insurance that covers all doctors, even those who do not take health insurance!

2. An all-expense paid, private plane for the entire family to a germ-free, tick-free tropical resort, complete with PANDAS/Lyme doctors and babysitters for two years or until your child is healthy again. Free yoga, drink of choice and whatever else helps you to mellow out. Fellow PANS parents who won't blink an eye if your child happens to be PANDASSY. 

1. A magical clock that stops time. You can hit the stopwatch whenever you wish to wander anywhere or to any time--sideways, forwards or backwards. Step back to that time before your child became ill and do what you can to prevent this disease--get those antibiotics or homeopathic treatments started, move to a country that doesn't have germs or ticks, avoid vaccinations--whatever you can accomplish by turning back time.

Or take a stop-the-world-I-need-to-get-off-day or month or year. Lounge on the beach by yourself to listen to crashing waves or stroll through a city halfway around the world without worrying about your family.

Or...leap ahead to see how much your child has recovered and how the world now recognizes this disease. Walk into a pediatrician's office and see the tests for PANS and Lyme that are given on a daily basis. Take a ride in the subway and see the advertisements for the latest PANS drugs that have basically wiped out this disease. 

Can you think of other gifts? What would you choose and why?

We wish everyone health, no financial worries and happiness. We wish for you that there is someone in your family or your circle of friends who believes in you and supports you. We wish that you have found a good doctor who has a plan for treating your child.

Please know that there are other parents out here thinking of you, caring about you and hoping for you. Wishing you hope, healing and love.

Conference Notes: Part 3 of 3! Final Installment

And here it is: Part 3 of 3 parts of my conference notes. Dr. Jones got two standing ovations, when he began and when he ended. I was disappointed that some of the doctors and scientists did not stay to hear him and Dr. Hubbuch speak about Lyme Disease. We need to all stick together. We're in this together and by excluding Lyme from PANS, it will take us a lot longer to get recognition and aid for both of these causes. 

My friends and I have a theory: many of these doctors who treat our children, Dr. Jones, Dr. Trifiletti...and I won't list others for fear of reprisals against them...are not only brilliant but are following some higher calling. There's something very special about doctors who will risk all to save a relatively "small" group of children when no one else will recognize or treat their disease. Dr. Jones did march with his friend, Dr. Martin Luther King, Jr.

I hope these doctors are long-remembered. I hope they become living legends. While no doctor is perfect, we hold all the doctors who have helped us in the highest regard. And for those doctors who told us we were not giving my son consequences, or our family was "too close?" Shame. 

So, here is the final installment. 

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Dr. Jolan Walter, MGH

Why IVIG works:

Decreases inflammation

Disrupts BCR (B cell receptor) aggregation in lipid rafts

Increases BCR internalization (turnover)

Over-active B-cells will not activate

IVIG replacement is .5 mg/kg/dose

Anti-inflammatory IVIG is 1.5-2.0 mg/kg, divided between 2 days

Over 50% of IVIG products are used off label in the USA

Rituxmab is a new drug

Dr. Jamie Micco, MGH Child Cognitive Behavioral Therapy Program

PANDAS/PANS symptoms: intrusive thoughts, perseveration, sticky brain

Physical discomfort is associated with these feelings and there are behavioral responses. Avoidance is rampant.

CY-BOCS is the gold standard (The Children's Yale-Brown Obsessive Compulsive Scale (CY-BOCS) is the instrument of choice for assessing symptom severity in older children (i.e., 8-18 years) diagnosed with obsessive-compulsive disorder (OCD).-- http://www.ncbi.nlm.nih.gov/pubmed/21340599

Tell your child they are getting spam/junk mail (it’s a way to conceptualize intrusive thoughts.)

Cognitive Behavior Therapy (CBT)/ Exposure Response Therapy (ERT) will help your child develop a fear and avoidance hierarchy. Child will begin with something in the mild/moderate range and work their way up. Each situation will get a fear rating. With success at earlier steps, it’s easier to get to later steps.

For children with the urge to confess, use delays.

Storch, et al (2006) studied 7 children who had PANDAS and were on SSRIs. 68% had a reduction in OCD symptoms after ERT. At the 3 month follow-up, there was a 46% reduction.

(My note: 7 children do not appear to me to be enough of a random sample size. I also question the fact that these children were on SSRIs, which do not work for many of our children. But I do believe that ERT can help.)

important: do not embark upon CBT at the height of symptom exacerbation as children may be too disregulated to learn skills and engage in exposures.

Panel:

It was stated that questions will later be posted on the Northeast PANS/PANDAS parents and/or PANDAS Network websites.

Hallucinations (Swedo)—EEGs have shown  changes in brain. Use antipsychotics, SSRIs to treat

“Cows milk is for calves” (Boch)

Is there strep in yogurt and milk? This was discussed. It’s a different form of strep completely than the GAS, yet many of our children should probably avoid dairy products to protect the gut.

EMF—(Boch)—may be affecting the BBB.  New data suggests this and Boch will be examining this in the near future.

Some of the kids with PANS are sensitive to anesthesia. Prolonged QT syndrome can result in a sudden cardiac death. Might need EKG. (http://www.nhlbi.nih.gov/health/health-topics/topics/qt/)

Don’t use Zyth and Biaxin together. Do EKG before putting child on azythromycin.  Azythromycin works right in the sinuses to help the child. However, there are azythromycin-resistant children (many in Pennyslvania.)

IVIG—every 6 months (Walter)

CVID and PANDAS: if replacement therapy is needed for immune deficiencies, do every month and add high-dose every 6 months.

No maintenance treatment with high-dose IVIG.

Then, the panel’s discussion, along with questions from audience, led to a change of suggesting IVIG every 3-6 months, depending upon how much the child declines.

Walter was not in favor of six-week treatments as it’s very expensive. The only data published is on single treatment with IVIG.

Inpatient programs for comprehensive treatment: Rogers Memorial in Wisconsin. There are some on the east coast. Email or call Dr. Swedo for recommendations.

Boch: there are more flares during allergy season.

Even on antibiotics, children are getting exposed to germs and can flare.

Flares usually last 5-7 days. Ride it out.  (This was an interesting comment because last year and before that, my son continuously flared—it was one LOOOOOOOONG flare. The moment he was better, we sent him back to school and then he flared AGAIN.)

See a doctor like Dr. Boch or Dr. Boch himself for natural immune modulators.

Peggy Chapman, R.N., C.S.:

How to explain the body to the kids:

IgM: attack marines

IgE: Airforce; they dive bomb with swelling, itching, allergies

IgA: Army

IgG: Navy; might become Th-17; they get to the war slowly, floating everywhere there is fluid, including your brain

When PANS occurs, the Navy has received the wrong intelligence and keep shelling the basal ganglia.

When the craziness hits your child, ask, “Who’s calling?”

Fear is not just anxiety. When in a flare, the child is not able to distinguish between fear and knowledge that it’s anxiety/fear.

Tamara Chansky and Anxiety Attack:  time intensity of anxiety. The attack is usually 20-30 minutes long. Differentiate the anxiety. “Your heart is pounding, because you are upset, not because you have to do something quickly.”

In the heat of the meltdown, reasoning does not work.

Anxiety lead to stomach aches, nausea, vomiting, trembling, shaking, sweating, tightness in chest, heart, neck.

Panic attacks are usually time-limited

Interview parents first alone. Kids are embarrassed and shamed to talk about these symptoms in front of people (i.e. some can’t tie their shoes anymore.)

Peggy told a story of a child who named his PANDAS symptoms “Mike.”

Show empathy toward child, “This feels really bad right now.” “Let’s work on this together.”

“How hard is this task?”  Develop a task scale.

OCD can involve sexual or forbidden thoughts.

CY-BOCS can help determine how disruptive these thoughts are.

Comorbidty of OCD and ADHD is very high.

A stimulant with too much dopamine can induce a tic.

Dopamines are big transmitters in this illness.

80% of seratonin is made in the gut!!!

Inflammation causes “rust.”  Antioxidants clean up the “rust.” (from Dr. Boch’s book; Pegggy Chapman quoted him. He was in the audience and smiled.)

Prozac, Zoloft, Luvox can be used for anxiety and OCD.

Benzodiazapines can increase GABA reliance

2-4 hours Xanax, Halcion, Serax, Versed

4-6 hours Lorazepam (Ativan)

Benedryl—get it in while in a meltdown

NAC amino acid

(Note: I was VERY impressed with Peggy Chapman.)

Dr. Hubbuch (Lyme)

Ticks are “nature’s dirty needles.” They carry multiple infections.

Lyme is transmitted en utero and through breast milk.

Birds can drop ticks into new areas (geographically.)

“The myth that there’s no Lyme Disease in Canada? Well, the ticks do cross the border.”

Studies have shown Lyme can be transmitted as quickly as 4 hours. “There is NO safe time for tick attachment.”

Prevention is much easier than treatment.

Permethrin can be used on clothing.

Put clothing at high heat in dryer for one whole hour to kill ticks. That’s how difficult it is to kill them.

The ELISA test is wrong 50% of the time (has false negatives.)

The Western blot is more specific. Most commercial tests are missing important bands that can determine if the patient has Lyme. When the Lyme vaccine was on the market, these bands turned positive for patients who had been vaccinated.

Band 41 is not specific. Bacteria can cause this band to show.

18, 23, 31, 39, 83-93 are all Lyme-specific bands

Even one specific band can indicate exposure to Lyme Disease

PCR—based on DNA materials. Unfortunately, Lyme is in the tissue, not the blood. Advanced Labs—in 16 weeks, show 94% accuracy (they say.) We need more testing on this.

If just bitten by a tick, you need at least 4 weeks of antibiotic like doxycycline.

Bartonella can cause RAGES.

Dr. Charles Ray Jones

Infection-induced autoimmune encephalopathy

90% of our genetic make up is made of organisms. If an immunization contains a component of an organism in our genome, we make antibodies against ourselves.

BTW, Dr. Jones told me that if a child is immune deficient, he should not receive vaccines.

Triggers for anti-neuronal antibodies include: strep, Lyme and coninfections, mycoplasma pneumoniae, bartonella (which can be tested through Igenex or Specialy Lab owned by Quest.)

Treat all lyme, all infections at once, including candida, or nothing will be treated.

IVIG replaces IgG in patients with immune deficiencies.

Children require 10-20 IVIGs before they are stabilized and cured. We must continue to treat for the infectious agents.

Low-dose IVIG is like shooting yourself in the foot. It stimulates cells to make more antineural antibodies.

Dr. Jones ended with this video: 

The Conference: Part 2 of 3

Following are my notes from the conference. You can also refer back to the Northeast PANDAS/PANS parents website for some of the slides. In some cases, I just wrote down information without comprehending it (i.e. when Dr. Cunningham was speaking--I would need another degree, I think, to totally follow her.) Dr. Trifiletti presented for parents although he can talk circles around all of us when he wants to. Dr. Bock also spoke to the parents and his presentation was easier for me to jot down although both he and Dr. T spoke scientifically as well.

According to Dr. T, PANDAS/PANS does not always have a clear onset (yay! I agree!) And strep is not the only trigger. Read the notes. I have enclosed links that I looked up. Any information given that is not clear or correct is my fault. I like taking notes by hand and sometimes I can't read my own hand-writing. Enjoy!

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Dr. Madeleine Cunningham, Co-founder and Chief Scientific Officer of Moleculera Labs

Identify potential antibody biomarkers

Infections are associated with brain and mental disorders

Molecular mimicry

Sharing of antigenic determinants between host and invading microorganism

Strep can affect the heart (carditis; results in murmer)

Strep can affect the joints (arthritis)

Strep can affect the brain (chorea)

Cerebral spinal fluid/ IgG penetrates into the brain 

Antibodies are signaled through enzyme CamKinase

There is a very highly correlated dopamine release

Body is making too much dopamine

D2 receptor is an inhibitory receptor

Dopamine binds to the D2 receptor, causing inhibitory reponse

IgG antibodies from strep-immunized rats induced Cam Kinase and were absorbed with anti-IgG

Induced antibodies against D1 and D2 dopamine receptors

Brimberg studies (Israeli scientist): http://www.nature.com/npp/journal/v37/n9/full/npp201256a.html

Dr. Ben-Pazi (Jerusalem) conducted another study: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0073516

Open BBB due to infection or STRESS would allow antibodies to get into the brain.

Epinephrine can break through the BBB.

Do hormones, pubertal changes, seem to make a difference?

Peggy Chapman:

According to Dr. Jenike, 40-50% of adult OCD patients might have PANDAS (note: this is anecdotal.)

Does this run higher in gifted children? No evidence to that effect. PANDAS is in the autism population. Lots of autoimmune and gut issues and inflammatory issues in the autistic population.

Janice Tona, PhD, OTR, Univ of Buffalo:

Impact of PANS on daily functioning formal research study will be published.

To see a thesis with results: tinyurl.com/PANSOTfunction

Diana Pohlman: In Italy, they injected children with intramuscular penicillin. 49/65 children had full or partial remission.

Dr. Trifiletti, pediatric neurologist

Character of child has completely changed-this is the hallmark of PANDAS

There is a mental status change and emotional lability

Sir William Osler (1894) on chorea and Choreiform affections

The description of this matches PANDAS!

Dr. Trifiletti: the association of arthritis and chorea did not escape the physicians in the 19^th century.

Dr. T: The heroes are our children and their arms because we draw a lot of blood.

The original Swedo criteria: motor/vocal tics and/or OCD (in the original version, it was OCD that was optional, now it is tics that are optional.)

A diagnosis of PDD-NOS is often considered when a child is 2 and gets PANDAS (sensory issues, tantrums)

Whenever you see an article/paper with a ? in it…this paper is not supporting PANDAS.

PANDAS is not just a pediatric disease.

The onset of PANDAS is NOT always acute (thank you, Dr. T!)

There are low-strep responders. ASO never rising can throw off clinicians.

Strep in the appendix has occurred (the know from removing the appendix)

When you see a kid who had 5 diagnoses, you’re probably talking about PANDAS.

It’s a pervasive disorder.

Onsets of PANDAS can occur at different ages:

If a 2 year old child is diagnosed with bipolar disorder, you’re probably looking at something more like PANDAS.

Infantile Mania Syndrome mimics mania, severe ADHD. Ends up with PDD-NOS  diagnosis. There is an atypical response to SSRIs and stimulants.

Juvenile onset mimics Tourettes and OCD

Adolescent onset: Kovacevic Syndrome: pure OCD, anxiety.

Leroy Syndrome—tics; can be confused with conversion disorder (the star athlete or student falls off….)

Acute crises: Exorcist Syndrome—similar to seizures. Voice changes. Limbs flail.

PANDAS is an interaction between the immune system and the brain; both of these symptoms are very complicated. This is a neuroimmune disease.

The innate immune system and the adaptive immune system (via vaccines, exposure)

The innate immune system controls the adaptive immune system

Not just strep can cause PANS. Other bacteria, viruses, etc. can trigger this illness.

How do these huge antibodies get across the BBB? (refer to Ditran’s model)

Many patients are “seronegative.”

Mystery: why do symptoms have that lightning-like onset?

There may be other pathogenic mechanisms at play.

Mitochrondria….

Dr. Ken Bock, integrative doctor

There is a neuro-immune connection

The central nervous system drives immunity

Check out his website for more info. http://www.bockintegrative.com

Gut-Brain Axis

TH17 cells cross the BBB

Leaky gut, leaky brain

TH1

TH2 regulate cells that produce antibodies

Treg balance the TH1 and TH2

Cytokines: immune messenger molecules

TH1: adaptive/memory, cell-mediated

TH2: adaptive/memory, antibodies

Th17 autoimmunity in the brain

Dr. Bock: inflammation begets inflammation and now we have a cycle.

The link between GAS and cellular responses could tip the balance toward autoimmunity. It’s not necessarily molecular mimicry.

There is increased asthma and increased allergies (i.e. peanut allergies) in the world today. Heavy metals can affect all levels of immune function.

BPA is in ATM receipts!

A healthy immune system keep T and B cells in check.

Fasano on celiac disease (here’s a link http://www.livingwithout.com/issues/4_15/qa_augsep11-2554-1.html)

Acute inflammation is a healthy response but not when it’s chronic.

Rheumatic fever, glomerulonephritis (kidneys) and Sydenham’s Chorea are all accepted post-strep disorders.

PANDAS is an “auto-inflammation”

Dr. Fasano:  Tacks Law:

“If you’re sitting on a tack, it takes a lot of Risperdal to make it feel good. The appropriate treatment for tack-sitting is tack removal.”

“If you’re sitting on two tacks, removing one does not produce a 50% improvement.”

Chronic illness is, or becomes, multifactorial.

Treat sinuses with meds that get into sinuses

Gupta: IVIG for kids with autism: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883089/

Diet as anti-inflammatory

Omega 3 EFAs often given

 Curcumin increases production of IL-10; is very helpful

Vitamin D3 can induce Treg cells but too much Vitamin D is toxic.