Archive for the ‘Psychological Aspects’ Category

Guidelines For Treating PANS – It’s Real  by Erin Digitale

5 Questions: Margo Thienemann on an alarming children’s psychiatric disease

Stanford clinicians helped develop the first clinical guidelines for treating pediatric acute-onset neuropsychiatric syndrome, a psychiatric problem linked to brain inflammation.

NOV 12017

Margo Thienemann

Margo Thienemann

For the last five years, a group of clinicians at the Stanford School of Medicine and at Lucile Packard Children’s Hospital Stanford have focused on what happens when the immune system attacks a child’s brain.

In Pediatric Acute-Onset Neuropsychiatric Syndrome, which is believed to stem from brain inflammation after a triggering infection, children suddenly develop severe obsessive-compulsive symptoms and other behavioral problems. They urgently need medical and psychiatric help. Yet many pediatricians and mental health professionals still lack awareness of how to treat the disorder.

To fill the gap, a multidisciplinary team of experts from several universities has published the first set of peer-reviewed treatment guidelines for PANS and its companion diagnosis, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS. Margo Thienemann, MD, clinical professor of psychiatry and behavioral sciences at Stanford, is the lead author of the portion of the guidelines that address psychiatric and behavioral interventions. Thienemann co-directs Packard Children’s PANS clinic, the first in the country exclusively devoted to the disease, with Jennifer Frankovich, MD, clinical associate professor of pediatric rheumatology.

Thienemann spoke with Erin Digitale about why the guidelines were needed and what else can be done to raise awareness of the condition.

Q. What do children and families affected by PANS/PANDAS experience?

Thienemann: Parents often describe children as turning into somebody completely different overnight. A child who was functioning just fine might suddenly feel like they had been “possessed” by something. They may be tearful and unable to separate from their parents. They may suddenly develop vocal or motor tics. The child may suddenly, after never having had appreciable obsessive-compulsive symptoms, engage in long periods of checking behaviors or cleaning behaviors, over and over. It suddenly takes hours to get out of the house or get the child to bed.

In addition to OCD symptoms, the other cardinal symptom is food refusal. Kids will suddenly be afraid to eat for fear they will choke, or fear that the food is poisoned, contaminated or spoiled. They may say food smells awful or express fear of vomiting. Again, this appears out of nowhere.

It’s like being hit by a train. Most often, the child will miss some school and at least one parent has to take a leave from work. It’s extremely anxiety-provoking because a normally functioning child suddenly can’t go to school, sleep, eat or be apart from parents, and is involved in rituals and tics. Another thing that’s very disruptive is trying to find someone who will provide medical and psychiatric care for your child. How do you find someone if providers say “I don’t believe in it” or “I don’t know how to treat this”?

Q. Why were the PANS/PANDAs treatment guidelines needed?

Thienemann: Right now, there isn’t enough solid, empirical evidence to say definitively “this is what you do” for these patients. For some aspects of treatment we have evidence, but overall we have to bridge the gap between our current clinical experience and knowledge, and the clinical studies. We are continuing to collect evidence, but many children will be identified with PANS/PANDAS before that work is complete. Physicians and other professionals need to know what to do for them now.

Also, despite the fact that we published diagnostic guidelines for PANS/PANDAS in 2015, I think some physicians still feel it’s not legit. We want physicians to take this disease seriously and, even more importantly, we really want them to treat it.

Q. What are some of the most important elements of the guidelines?

Thienemann: The treatment is at least tri-part. The main thrust of treatment is that if there is a triggering infection, we should treat the infection, and also treat close contacts who may be exposing the child to infection. We also have to treat inflammation, which is what we think causes the brain symptoms.

The psychiatric portion of the guidelines recognizes that the child and family are really suffering and the child needs psychiatric treatment to help with symptoms. We have to manage the child’s distress so they can get medical treatment, get blood drawn, get MRIs, take medications, so the family can sleep, and the child can sleep. We also need to help the family understand what might be going on, what they can anticipate from treatment, how to interact with each other and their child around the illness, and how to interact with the child’s school.

Unfortunately, a lot of the tools in psychiatry are medications — for OCD, depression, ADHD, tics — that don’t work the same way on an acutely inflamed nervous system as they would on garden-variety, idiopathic childhood mental illnesses. When medications are used, usually for residual symptoms, the guidelines suggest beginning with one-fourth of the typical starting dose of medication and increasing the dose very slowly. There can be complex interactions between medications, and between the medications and other changing variables related to where a child is in the illness and concomitant treatments. It makes treatment complicated.

Q. What are some of the gaps in how our health care system is set up to treat these children?

Thienemann: Unfortunately, we lack a good place to hospitalize these kids.

If we put them in a pediatric hospital when they’re unpredictably agitated or rageful, it doesn’t work. Pediatric hospitals are not set up for kids who may run out of the hospital or hit someone. Little sounds bother PANS/PANDAS patients, so the constant beeping of monitors doesn’t help, and lights bother them, so they don’t sleep in a hospital setting. It can be very difficult on hospital staff.

Psychiatric hospitals are also hard for these patients to tolerate. They have a brain inflammation problem, not a behavioral problem, so typical behavioral interventions aren’t helpful. And in psychiatric settings, parents don’t get to stay with their children. For many other pediatric psychiatric diagnoses, the parents may be a part of the problem, and some of the process of diagnosis is seeing how the child acts away from parents. But most children with PANS/PANDAS have terrible separation anxiety as part of their illness, and it’s very hard on them to be away from their parents. Psychiatric hospitals also are usually not comfortable working up an infection or giving intravenous treatment, which is required for some of the immune therapies used for this disease, so the children’s medical needs can’t always be met in a psychiatric setting.

Often, there is no place other than home to treat children with PANS/PANDAS, which can be really hard on the family. Ideally, for the future, I see a day when we have med-psych units for these patients in the same way that we now have excellent med-psych units for eating disorders. We would need hospital staff who specialize in addressing the psychiatric problems and family stress that go along with PANS/PANDAS, as well as people who can diagnose and treat the more traditional medical problems.

Q. What other changes do we need next for PANS/PANDAs patients?

Thienemann: Early identification. When someone comes to their doctor with sudden behavioral change, emotional change, suddenly has tics or suddenly stops eating, this disease should automatically be on the differential diagnosis. If we identify it early, it’s less complicated to treat and the patients have better outcomes.

For online support for parents with kids infected with Lyme/MSIDS:


Healing Power of Gratitude

TOUCHED BY LYME: The healing power of gratitude ornaments
The following is republished from my blog last year. It has been updated slightly.

Guest blog by Rachel Leland

In November of 2015, I was in month six of what ended up being 13 months of intense mold treatment (on top of Lyme treatment).

I wasn’t allowed to even step foot inside any building that hadn’t been cleared for mold. No shopping malls, no movie theaters, not even a grocery store.

I was a prisoner in my apartment and I didn’t like it one bit. At that time, I could easily list off all the things going wrong in my life—and was hard-pressed to acknowledge anything about it that was good.

One day, I muttered to one of my practitioners that I wasn’t going to hold my breath for any of my various treatments to work. That’s when she gently reminded me how healing it can be to focus on the good, not the bad, in our lives. For days after our conversation, I thought about what she said.

There WERE good things about my life. I was fortunate enough to be living in a mold-free apartment. I had supportive parents. A brother who texted me funny things that happened to him throughout the week to keep my spirits up. A boyfriend who tremendously helped me through the mold treatment and did all the shopping, making it possible for me to stay out of buildings. And friends who came over to keep me company.

And the more I purposely thought about those things, and felt thankful for them, the easier it was to find other positive things about my situation. This all went down at the end of November, and with my new way of thinking, I got an idea of how to decorate my very first Christmas tree away from my parents’ house.

I made what I called “gratitude ornaments,” which were pieces of colored paper with Christmas ribbon attached to them. I made 25 blank ones, and each day leading up to Christmas, I would think about something I was truly grateful for that day, write it on the ornament and place it on the tree. On Day One, for instance, I wrote:

Thankful for my amazing parents who never give up on helping me.

Throughout the month, my tree grew more and more colorful, until by Christmas Day, it was blooming with wonderful, positive aspects about my life. On the good days it filled me with happiness to see all those things I was grateful for. On the bad days, it was a lifeline.

Many times that Christmas season, I found myself standing in front of the tree, re-reading what I was grateful for, to remind me that things weren’t only bad.

On one particularly tough day, I sat at my desk, staring at my blank gratitude ornament, thinking that I couldn’t possibly find a single thing to be thankful for. At this point my food allergies were at their worst, and nearly every week I lost another one of the precious few foods I could still eat. At times, the agony of losing yet another food was unbearable. I contemplated skipping that day and not putting any ornament on the tree.

But I knew that wasn’t how it worked. I had to find something to be grateful for. And finally I knew what it was—I was thankful for stevia. It was something I could still eat and it was the only thing I could use in cooking to make food sweet. So up there on my Christmas tree, along with being thankful for my family, friends, and all these other good things in my life—was stevia.

And I’m still thankful for stevia today!

After Christmas was over, I took down my 25 gratitude ornaments and placed them in a bag labeled Christmas 2015. In 2016, I repeated the process. Now, in 2017, I’ve got my little tree in its place of honor and my blank ornaments are all ready for December 1.

(I’ll give you a hint about something that’s sure to be recorded on an ornament. That boyfriend I mentioned earlier is now my husband!)

I plan to keep all of my gratitude ornaments–forever–so that I can look back each year and see the 25 best things about my life at that moment in time.

And every year, I’ll write down the things I’m thankful for and watch as my little tree gets filled with happiness each day because of it.

Rachel has been dealing with Lyme and related issues since 2005. Now 26, she resides in Arizona. Her blog is Resilently Rachel.

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



Great idea and quite true.  Our attitude is crucial in the healing process.

When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord hath done.


Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.

Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will keep singing as the days go by.


When you look at others with their lands and gold,
Think that Christ has promised you His wealth untold;
Count your many blessings. Wealth can never buy
Your reward in heaven, nor your home on high.


So, amid the conflict whether great or small,
Do not be disheartened, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.


Words: John­son Oat­man, Jr., Songs for Young Peo­ple, by Ed­win Ex­cell (Chi­ca­go, Il­li­nois: 1897).

Music: Edwin O. Excell (MI­DI, score).

Dr. Frid – Lyme, Parkinson’s & Autoimmunity

 Approx. 8 Min

Dr. Elena Frid is a guest medical contributor for AM 970 The Answer with Joe Piscopo. Today they discuss a possible link between Autoimmunity and Parkinson’s.  She mentions Lyme Disease being an infection of the brain and it’s relationship to other diseases.


For More:   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.

Lyme & Mental Illness – Dr. Jane Marke

 Approx. 50 Min

Lyme and Psychiatric Illness: Jane Marke, MD at Central Mass Lyme Foundation Conference

Dr. Marke explains how Lyme Disease and associated infections cause psychiatric symptoms in her lecture to the Central Massachusetts Lyme Disease Foundation. Paths to treatment are suggested.

For more on psychiatric Lyme:

Another speech by Dr. Marke that I highlight:

One more on PANS/PANDAS, Steroids, Autoimmune Disease, and Lyme/MSIDS:  A lot covered here, but please know pathogens such as tick borne infections can trigger or exacerbate other autoimmune issues.  Excerpt:  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.


Amy Hilfiger & Lyme

Published on Oct 31, 2017

Ally Hilfiger shares her experiences at Focus on Lyme 2017

Ally Hilfiger, daughter of famous fashion designer Tommy Hilfiger, has struggled with Lyme disease since childhood. We included an excerpt of her book “Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me” in our Fall 2016 Lyme Times issue. To take a look, click here:…


Post Traumatic Growth: Reframing the Trauma of Chronic Illness


After reading one of the most intense chapters of my upcoming memoir—about the downward spiral that led to my April 2007 relapse—a fellow writer said to me,

“I see a lot of post traumatic growth emerging here.”

I looked at her quizzically. Post traumatic growth? Didn’t she mean post traumatic stress? That period was one of the most traumatic of my life, and even ten years out, I still get some traditional PTSD symptoms every April: flashbacks, nightmares, anxiety, increased concern that the relapse could happen again. Surely, reading about the initial trauma itself, this writer was talking about the post-traumatic stress that would emerge in the years following the relapse.

But I had heard her correctly. She meant post traumatic growth as she saw it reflected in my writing, especially the parts where I used an older, wiser voice to look back on the difficult event and draw lessons from it. My friend, an Air Force veteran who writes about her deployment to Afghanistan, is familiar with both trauma and reflection.

She’s also familiar with post traumatic growth, a concept that is being used to help veterans not just bounce back after experiencing trauma, but grow from it and change their lives for the better. Developed in 1996 by psychologists Richard Tedeschi and Lawrence Calhoun, the theory holds that “people who endure psychological struggle following adversity can often see positive growth afterward.” As Tedeschi explained in an interview for the American Psychological Association, “people develop new understandings of themselves, the world they live in, how to relate to other people, the kind of future they might have and a better understanding of how to live life.[1]

These were exactly the kind of changes I  experienced after surviving my relapse. Until that point, I’d always talked about “getting back to life” after Lyme disease. It wasn’t until I went back to ground zero that I realized it wasn’t about going back; it was about moving forward in spite of Lyme. Tick-borne illnesses were coming with me, and I had to figure out a way to neutralize them as best I could their impact on my future.

I’ve always considered myself a resilient person, but post traumatic growth is about more than just resilience. As explained in a March 2016 article in The New Yorker article titled  “Can Trauma Help You Grow?”, “Psychologists have long studied resilience—the ability to bounce back and move on. But post traumatic growth, which has been documented in hundreds of studies, is different; it’s (more about) what happens when trauma changes and deepens life’s meaning.”[2]

Of course, this growth takes time. For me, it took many conversations with my doctor, my therapist, my family and my friends. It’s taken 10 years for me to fully recognize and appreciate the ways Lyme has changed me for the better, such that I can reflect upon those changes in writing.

To chart post traumatic growth, Tedeschi and Calhoun look for positive responses in five areas: appreciation of life; relationships with others; new possibilities in life; personal strength; and spiritual change. I can now attest to positive changes in all of those areas, but I certainly could not have done so in the past when I was stuck in bed, unable to think about anything beyond migraines and joint pains, suffering hallucinogenic dreams only to wake into a living nightmare.

But the beauty of post-traumatic growth is, it’s not supposed to happen right away. In fact, it can’t happen unless you first come to some understanding of your trauma. And here’s the best part: Tedeschi asserts that post traumatic growth is far more common than post traumatic stress disorder.[3]

That’s an assertion I can also attest to. While I’ll likely always have some distress in April, and while I still get nervous about a relapse when my symptoms flare up, those periods are mere drops in the bucket of growth that I’ve amassed in the last decade. Lyme disease has changed me for the better, and I wouldn’t change that for anything.  How’s that for irony?

Next week Jennifer will be answering your questions about Lyme disease. Have a question for Jennifer? Email her at




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



Great read.  Seriously.  Great read.

We can’t change the fact we’ve been infected but we can, over time, change how we react to it.

Lyme Wars – Part 2 Kyra Overcomes Chronic Lyme Diagnosis video here)  Published on Oct 24, 2017

Kyra Lerner tells her story of struggle and recovery after contracting chronic Lyme, a controversial diagnosis linked to Lyme disease-carrying ticks. Kyra’s story is the second in our five-part investigative series. Natalie Pasquarella reports.

For more:



Lots of great info presented in this story – particularly the polarization of medicine and the fact that if Kyra’s parents would have followed the paradigm of the Infectious Diseases Society of America (IDSA), where they espouse essentially 21 days of doxycycline to be curative in all cases, she would be sicker than a dog with no hope.  Thankfully, she and thousands of others have followed the paradigm of the International Lyme and Associated Diseases Society (ILADS) who believe Lyme is pleomorphic and persistent, requiring much more than 21 days of doxycycline as well as the fact there is often coinfection involvement, requiring different drugs for far longer than a month.  This group also believes that IV treatments can be quite helpful for a subset of patients despite the government’s recent attempt to stop IV therapy for Lyme/MSIDS:

For a great article explaining the tug of war:  TheCaseforthePersistenceofLymeDiseaseAfterAntibioticTherapy  The truth is that over 50% of the IDSA’s guidelines are based on “expert opinion” rather than “evidence-based medicine” as their publication suggests. A further 31% of the IDSA guidelines are based on observational studies. Only a meagre 29% of the IDSA Guidelines fit into “evidence-based medicine”.(22,23,24,25,27) Importantly, the IDSA’s own research supports these very findings.(22

Please understand for those of you just tuning in – THIS IS A WAR of epic proportions.

The reason we find ourselves here even 40 years after Lyme was “officially” discovered is due to money, power, and collusion at the highest level of government.  The government holds the patents on Borrelia burgdorferi (Bb), Lyme testing, the Lyme vaccine, and has been controlling the narrative for decades, even taking specific bands out of Lyme testing that show infection due to their patent on the Lyme vaccine. Gov. patent on OspA (outer surface protein) of Borrelia Burgdorferi (Bb).  Gov. patent on Lyme test based on OspA (outer surface protein) which causes the same disease it was meant to prevent which is the real reason it was yanked from the market. Gov. patent on Lyme Vaccine  A lengthy expose on all shenanigans for the stout of heart.

Please, don’t allow yourself to be fooled.  The powers that be have been controlling research and the narrative on Tick borne illness from the start.  Nothing about this is new. It’s as old as the hills.  In fact, one researcher has filed an anti-trust law-suit due to government suppression of a more accurate and cheaper Lyme test:

This same researcher and others have also complained of how the CDC is controlling the research being done:  This article explains how they do it on a practical level:

So while I’m extremely happy for these news stories, this abusive treatment of Lyme/MSIDS patients and the doctors who dare to treat them has been going on since it was formally given a name in the 80’s.