Archive for the ‘Psychological Aspects’ Category

Killer Green The Musical – Coming Up March 3 & 4

Ava KG

Show Description:  Killer Green follows the lives of two pivotal couples in different stages of life as the two lead female character battle a widely ignored chronic illness.  Based on biographical accounts, this musical attempts to uncover the dark truth behind how Lyme Disease affects its victims, educate viewers on the reality of these stories, and expose the widespread ignorance of the medical community.

This show was graciously funded by The Wisconsin Lyme Network, a nonprofit organization dedicated to raising awareness for this cause.

Warning:  Killer Green depicts suicide, depression, and topics that viewers might find disturbing but Lyme patients struggle with daily.


Written, choreographed, and directed by Audra Cashman, a student graduating in Musical Theater at Peck School of the Arts at the University of Wisconsin Milwaukee for her Senior Honors Project.
Ms. Cashman’s parents both have Tick borne illness and her mother heads a local support group for patients. Killer Green draws upon personal experience and the experiences of many local Wisconsin patients.

See you there and wear your green!











Cognitive Behavior Therapy Offer For Lyme/MSIDS Patients

Recently there’s been some great info coming out on psychotherapy for Lyme/MSIDS patients.  Below is a current offer to pay what you can for a one hour educational session learning cognitive behavior therapy skills for Lyme/MSIDS patients.  Ruschelle Khanna, LCSW, and a Lyme patient herself, is located in the New York area and is Lyme literate.  Click on link for info and to sign up.

Cognitive Behavioral Therapy: Tools for Healing Lyme Related Anxiety

Join Ruschelle Khanna for a 1 hour educational session explaining the power of Cognitive Behavioral Therapy (CBT) techniques for managing Lyme related anxiety.

CBT is meant to be used both in a therapy office and as a self help tool. CBT is full of skills that we can learn and use for the rest of our lives.

She will offer three specific CBT skills you can start to implement today to find relief from anxiety and other disruptive thoughts associated with Lyme.

NOTE – This is not a therapy session. This is for educational purposes only.


For more info:




Finding the Right Psychotherapist for Your Child with Lyme Disease

Finding the right psychotherapist for your child with Lyme disease


By Sandra K. Berenbaum, LCSW

For some parents and children confronting the challenges of Lyme disease, psychotherapy or family therapy can be a big help. Before seeking a psychotherapist, however, there are a number of things to consider. Different therapists use a wide variety of techniques in their work with clients. Methods that work well for the general client population may not be effective for Lyme patients. Some may actually be counterproductive.

For example, if the therapist doesn’t realize that fatigue in Lyme patients is far beyond merely being tired, she may expect more than the patient is capable of doing. If the therapist doesn’t understand the reason for long-term medical treatment, and a 16-year-old girl complains about being on antibiotics, the therapist might support the teenager’s position, and encourage her to stand up to her parents on the issue. Without appreciating the complexities of tick-borne diseases, a therapist may not understand the many reasons why patients cannot attend school for long periods of time, or go away to college right after high school graduation.

One goal of psychotherapy is to promote improvements in the way a client functions—going to school or work, doing well there, being able to do errands and chores. Yet, for many Lyme patients, no amount of psychotherapy will improve their ability to function. That’s because their functional problems stem from their physical illness, which won’t be fixed without effective medical treatment. A therapist who knows this will understand the need to help the Lyme patient set different goals than could be reachable for a client that does not have Lyme.

There is widespread misunderstanding of Lyme disease in the medical arena. Just reaching a diagnosis of Lyme disease can be a traumatic experience for the child and the whole family. This trauma, on top of that caused by the illness itself, can give rise to issues not present among others seeking therapy, even those with most serious illnesses.

Consider the following scenario, an example of one I commonly see with families in my practice. When their 8-year-old son first starts exhibiting joint pain, headaches or other symptoms, the parents take him to the pediatrician. Not recognizing that he may have Lyme disease, the doctor tries a variety of treatments that do not bring relief. Then he refers them to a rheumatologist or other specialist, who also fails to consider that Lyme disease might be the cause of this boy’s illness. The specialist tries a variety of treatments that don’t help either. The child continues to complain about pain and misses a lot of school because of it. Suspecting that the problem is psychosomatic, the doctors give up exploring underlying medical explanations. They refer the child to a psychiatrist.

The psychiatrist, who also doesn’t know much about Lyme disease, presumes that these symptoms are caused by a mental illness and prescribes psychiatric medication. With undiagnosed Lyme disease, those drugs may have a paradoxical effect or none at all. Then, the psychiatrist becomes convinced that the child is mentally ill. He may even decide it’s severe enough for him to be admitted to a psychiatric hospital. In the hospital, this child with undiagnosed Lyme disease will be “treated,” perhaps with more psychotropic medications, along with individual and group therapy. All of this treatment is focused on the psychiatric illness that the doctors have presumed this child certainly has.

In my experience, many Lyme patients are misdiagnosed with mental illness because doctors fail to uncover the physical origin of their symptoms. The problem is not limited to tick-borne diseases. According to Harvard psychiatrist Barbara Schildkrout, more than 100 physical ailments can manifest symptoms that appear to be mental illness. In her book “Unmasking Psychological Symptoms,” Schildkrout writes:

Many widespread and familiar maladies can masquerade as mental disorders: thyroid disorders, diabetes, Alzheimer’s disease and other dementias, sleep apnea and other sleep disorders, temporal lobe epilepsy, HIV, the long-term consequences of head trauma, Lyme disease, and the side effects of medications, to name only a few. These and other physical conditions are common in patients who are seen by mental health practitioners; these medical conditions are also often the very source of the presenting clinical picture.

Dr. Robert Bransfield is a psychiatrist and noted expert on how Lyme disease affects the brain. He says Lyme-related psychiatric symptoms may start with brain fog and fatigue, progress to anxiety and depression, and eventually lead to major psychiatric disorders such as psychosis and suicide. He characterizes Lyme disease as a brain trauma and notes that it can cause different impairments in different people.

Most research into Lyme and the brain looks at adults, not children. However, in 2001, a study published in the Journal of Neuropsychiatry and Clinical Neurosciences compared children with neurological Lyme disease to healthy control subjects. The researchers found that children with Lyme had significantly more cognitive and psychiatric issues. They concluded, “Lyme disease in children may be accompanied by long-term neuropsychiatric disturbances, resulting in psychosocial and academic impairments.”

Excerpted from “When Your Child Has Lyme Disease: A Parent’s Survival Guide,” by Sandra K. Berenbaum, LCSW, and Dorothy Kupcha Leland. Published by Lyme Literate Press. Berenbaum has a psychotherapy practice that focuses exclusively on Lyme disease patients and their families. She is a member of ILADS and advises a number of Lyme patient advocacy groups. Her website is



Fantastic article.  I highly recommend Berenbaum and Leland’s book as it will be a helpful resource for parents who have infected children.  I always thank and encourage family members who attend the support group as in my experience patients who have family support always do better than those are fight alone.  We all need someone in our corner, believing us, encouraging us, studying and learning with us, and sticking up for us.  It validates us when we find ourselves in an unpopular experience that is vilified by the medical community at large.  This alone creates a whole host of issues such as depression and anxiety.  Patients are often abused by the very professionals they seek for help.  It’s a horrible situation.

For more on the psychiatric issues with Lyme/MSIDS/PANS: and (both links with great info by Dr. Marke)  “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.”  (Many other links within this article)  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.”




Depression Not Caused by Chemical Imbalance

Depression Not Caused by Chemical Imbalance  


January 18, 2018

Story at-a-glance

  • Many people believe depression is caused by a chemical imbalance in the brain; this chemical imbalance theory has been widely promoted by drug companies and psychiatrists alike — without evidence to back it up
  • Pharmaceutical companies were instrumental in bringing the chemical imbalance theory to the mainstream, heavily promoting it as a marketing gimmick to sell antidepressant drugs
  • Studies have repeatedly shown antidepressants work no better than placebo for mild to moderate depression, yet carry a significant risk of side effects
  • Depression is likely the result of multiple environmental and biological factors, including faulty mood regulation by the brain, genetic vulnerability, stressful life events, nutrition, medications and medical problems, among others

By Dr. Mercola

Do you know what causes depression? Many people would respond that it’s due to a chemical imbalance in the brain. This chemical imbalance theory has been widely promoted by drug companies and psychiatrists alike, to the extent that it’s accepted as fact. The glaring problem is that the chemical imbalance theory is just that — a theory — and worse still, it’s a theory that has been largely discredited.

The theory was first proposed by scientists in the 1960s after it appeared certain antidepressant drugs worked by altering brain chemicals, but it was stated that “the findings are inconclusive.”1 Yet, the theory was proposed at a time when treating mental illness via psychoanalysis was falling out of favor while viewing it as tied to a physical or biological mechanism was in vogue.

The idea quickly spread, becoming the medical dogma for depression, despite concrete evidence proving its worth. “The fact that practicing physicians and leaders of science bought that idea, to me, is so disturbing,” Steve Hyman, director of the Stanley Center for Psychiatric Research at the Broad Institute of MIT and Harvard, told Quartz.2 The news outlet continued:

“It’s not hard to see why the theory caught on: It suited psychiatrists’ newfound attempt to create a system of mental health that mirrored diagnostic models used in other fields of medicine. The focus on a clear biological cause for depression gave practicing physicians an easily understandable theory to tell patients about how their disease was being treated.”3

Prozac, Zoloft Bring Chemical Imbalance Theory for Depression to the Mainstream

The release of the antidepressant Prozac (fluoxetine) in the late 1980s was a game changer for depression treatment in that the drug’s maker, Eli Lilly, heavily promoted the chemical balance theory as a marketing gimmick to sell the drug. With fewer side effects than some of the earlier antidepressants, Prozac became a blockbuster drug and the poster child for the selective serotonin reuptake inhibitor (SSRI) class of antidepressants, which target the neurotransmitter serotonin.

“There was, of course, no demonstrable evidence showing that depressed patients had any imbalance, but Lilly ran with it,” Psychology Today noted. “Before long, psychiatrists and psychiatric patients alike came to identify with the idea that mental disorders are caused by chemical imbalances in the brain.”4

Zoloft (sertraline), another SSRI, was another major player in spreading and perpetuating the chemical balance theory, with their television ads going so far as to say, “While the causes are unknown, depression may be related to an imbalance of natural chemicals between nerve cells in the brain. Prescription Zoloft works to correct this imbalance.”5

It’s important to note that in the time since Prozac flooded the market, depression still remains poorly treated, despite a plethora of new antidepressant options to choose from. SSRIs work by preventing the reuptake (movement back into the nerve endings) of the neurotransmitter serotonin.

This makes more serotonin available for use in your brain, which is thought to improve your mood since low serotonin levels are said to lead to depression. Yet, as written in the Handbook of Experimental Pharmacology, it’s a largely disproven theory:6

“Antidepressants are supposed to work by fixing a chemical imbalance, specifically, a lack of serotonin in the brain. Indeed their supposed effectiveness is the primary evidence for the chemical imbalance theory. But analyses of the published data and the unpublished data that were hidden by the drug companies reveal that most (if not all) of the benefits are due to the placebo effect.

Some antidepressants increase serotonin levels, some decrease it, and some have no effect at all on serotonin … The serotonin theory is as close to any theory in the history of science having been proved wrong.”

Harvard: Depression ‘More Complex’ Than a Brain Chemical Imbalance

It’s quite possible that people who are depressed may have an imbalance of certain chemicals in their brain. But to speculate that that imbalance is the cause of their symptoms is overly simplistic. For instance, it’s known that psychological stress can cause biological changes in the brain, including a reduction in the size of the hippocampus, which is used for learning and memory.7 In turn, it’s known that some people with depression have a smaller-than-average hippocampus.8

“Evidence of biological changes correlating with environmental stressors is vastly different from evidence that mental illnesses are ‘caused’ by biological deficits,” scientists wrote in a 2008 report on the chemical imbalance theory,9 and this is an important point. Even Harvard Medical School acknowledges that while brain chemicals may play a role in your mood, it is not accurate to suggest that one being too high or too low is at the root of depression. They state:10

“Research suggests that depression doesn’t spring from simply having too much or too little of certain brain chemicals. Rather, there are many possible causes of depression, including faulty mood regulation by the brain, genetic vulnerability, stressful life events, medications, and medical problems.

It’s believed that several of these forces interact to bring on depression … There are millions, even billions, of chemical reactions that make up the dynamic system that is responsible for your mood, perceptions, and how you experience life.”

One theory posits, for instance, that stress could be a major contributor to depression because it suppresses the production of new neurons in the hippocampus. In order to feel better, people with depression may need to increase neurogenesis (the generation of new neurons), which takes weeks.

This would explain why many people who take antidepressants don’t notice any improvement for several weeks.11 If the action was really on neurotransmitters, the patient should feel better right away when levels increase. Instead, triggering the growth of neurons could be the secret, which is a process that can be triggered naturally via exercise.

Believing Depression Is Caused by Chemical Imbalance Worsens Outcomes

Aside from the serious implications of prescribing drugs under a false premise, the chemical balance theory is also dangerous in that it takes away ownership from the patient. If a person feels a chemical imbalance in their brain is to blame for their depression, they may believe taking medications is the only option to feel better. According to Todd Kashdan, professor of psychology at George Mason University in Virginia, upon “buying into a biomedical explanation for their depression:”12

“They become pessimistic that recovery is possible. They become less confident that they can manage and regulate negative moods that arise (and they always do). The notion that depression is their brain’s fault does not lessen the stigma or self-blame one bit.

And they no longer believe that psychotherapy is a credible or useful strategy for treating their depression and instead, are ready to be dispensed a pill cure. Essentially, they become less flexible in their options for treating depression and less confident that they will escape its clutches.”

Indeed, a 2014 study published in Behavior Research and Therapy revealed just that — attributing depressive symptoms to a chemical imbalance made people more pessimistic about their prognosis and led them to believe that drugs would be more effective than psychotherapy.13 At the same time, they still felt the same amount of self-blame. It’s important to note that –

feeling depressed is not anyone’s fault, nor should they feel blamed for or ashamed of their feelings.

However, pinning its cause on a chemical imbalance is likely to worsen outcomes rather than improve them. It’s a vicious cycle as well, because the chemical imbalance theory makes people assume that medications are the best course of treatment. But here again research has shown that people with depression who are treated with medication have poorer long-term outcomes compared to those who are not.14

Antidepressants Work No Better Than Placebo

Nearly 7 percent of U.S adults suffered from a depressive episode in the past year15 while, worldwide, 350 million people suffer from depression, making it a leading cause of disability.16 Despite this, only about one-third of Americans with depression get treated,17 which puts the remaining two-thirds left untreated at increased risk of suicide and with a lower quality of life.

That said, the antidepressant drugs that are supposed to work by fixing a chemical imbalance in the brain are largely ineffective, which means that even when some people attempt to get treatment, they’re left suffering. Studies have repeatedly shown antidepressants work no better than placebo for mild to moderate depression.18

Irving Kirsch, associate director of the Program in Placebo Studies at Harvard Medical School, has conducted meta-analyses of antidepressants in comparison to placebo and has concluded that there’s virtually no difference in their effectiveness, noting, “The difference is so small, it’s not of any clinical importance.”19 What is different, however, is the potential for side effects, which is far greater among antidepressants than placebos.

For instance, antidepressant users have an increased risk of developing Type 2 diabetes,20 even after adjusting for other risk factors, like body mass index (BMI).21 Antidepressant use has also been linked to thicker arteries, which could contribute to the risk of heart disease and stroke.

The results of a study of 513 twin veterans, presented at the American College of Cardiology meeting in New Orleans in 2011, found that antidepressant use resulted in greater carotid intima-media thickness (the lining of the main arteries in your neck that feed blood to your brain).22

This was true both for SSRIs and antidepressants that affect other brain chemicals. Further, the use of antidepressants is also associated with an increased risk of heart attack, specifically for users of tricyclic antidepressants, who have a 36 percent increased risk of heart attack.23

Meanwhile, the drugs are also linked to dementia, with researchers noting “treatment with SSRIs, MAOIs, heterocyclic antidepressants, and other antidepressants was associated with an increased risk of dementia,” and as the dose increased, so too did the risk.24

The drugs are also known to deplete various nutrients from your body, including coenzyme Q10 and vitamin B12 — in the case of tricyclic antidepressants — which are needed for proper mitochondrial function. SSRIs may deplete iodine and folate,25 and you’re even more likely to relapse if you’re treated with antidepressants than if you’re treated via other methods, including placebo or exercise.26,27Given the lack of effectiveness and the risks involved, Kirsch and colleagues concluded:28

“When different treatments are equally effective, choice should be based on risk and harm, and of all of these treatments, antidepressant drugs are the riskiest and most harmful. If they are to be used at all, it should be as a last resort, when depression is extremely severe and all other treatment alternatives have been tried and failed.”

Alternative Treatments for Depression

If the chemical imbalance theory is false, the case for choosing antidepressants as a first-line treatment for depression is incredibly weak. Fortunately, there are many alternatives to drugs for treating depression, including nutritional interventions, light therapy, exercise and more. If you’re struggling with depression, you needn’t suffer in silence. Seek help, from a counselor, a holistic psychiatrist or another natural health practitioner to start the journey toward healing.

That said, if you are feeling desperate or have any thoughts of suicide, please call the National Suicide Prevention Lifeline, a toll-free number: 1-800-273-TALK (8255), call 911, or simply go to your nearest hospital emergency department. You cannot make long-term plans for lifestyle changes when you are in the middle of a crisis. If you’re in a place where you feel you can begin to make positive changes, here are some of the top alternative treatments for depression to consider:

Exercise. Those who didn’t exercise were 44 percent more likely to become depressed compared to those who did so for at least one to two hours a week.29
Light therapy. Light therapy alone and placebo were both more effective than Prozac for the treatment of moderate to severe depression in an eight-week-long study.30
Omega-3 fats, which have been shown to lead to improvements in major depressive disorder.31 Make sure you’re getting enough omega-3s in your diet, either from wild Alaskan salmon, sardines, herring, mackerel and anchovies, or a high-quality animal-based omega-3 supplement.
Optimize your vitamin D levels, another factor linked to depression32
Magnesium. Magnesium supplements led to improvements in mild-to-moderate depression in adults, with beneficial effects occurring within two weeks of treatment.33
B vitamins. Low levels of B vitamins are common in patients with depression, while vitamin B supplements have been shown to improve symptoms.34
Mindfulness meditation35 and the Emotional Freedom Techniques (EFT). In a study of 30 moderately to severely depressed college students, the depressed students were given four 90-minute EFT sessions. Students who received EFT showed significantly less depression than the control group when evaluated three weeks later.36
Cognitive behavioral therapy, which works as well as antidepressants and may reduce your risk of relapse even after it’s stopped.37
Limit sugar. Men consuming more than 67 grams of sugar per day were 23 percent more likely to develop anxiety or depression over the course of five years than those whose sugar consumption was less than 40 grams per day.38
A very helpful article for Lyme/MSIDS patients as we nearly always at some point suffer with depression.  
Some of you might be on antidepressants and this article has left you floundering.  Take a deep breath and decide you are going to take this information, study it, and talk to your practitioner before deciding upon any course of action.
Please seek help if you need it.  If possible find at least a “Lyme friendly” practitioner as the last thing you need is to be abused by another health professional when you are at your lowest.  Hopefully the word is getting out on the psychiatric manifestations of Lyme/MSIDS.  Start by going to your local Lyme support group and ask around for a good, reputable, understanding, and hopefully experienced practitioner.
For those of you in the trenches, I want to encourage you that this too shall pass.  I found my depression while in treatment for Lyme/MSIDS was directly aligned to how I felt physically.  The worse I felt physically the worse I felt emotionally.  I’ve said this before, but the best advice I ever received from someone who made it to the other side of health was, “Don’t get depressed about feeling depressed.”  Give yourself permission to feel lousy.  Your body is in a battle of epic proportions – you’re bound to feel like crap.
Treating for Lyme/MSIDS is unlike most other treatments that have linear improvement.  You are going to have starts and stops, good days and bad, and down right horribly miserable days.  You are going to have days where you beg to have it all end.
Persevere.  Don’t quit.  Better days are coming.  Do not give in to the moment.  
When I got really low I read books where others had it worse than me.  I watched cartoons, anything to get my mind off the pain and hopelessness.  For a long time I didn’t read anything about treatment outcomes, because frankly I couldn’t have handled the truth.  That’s OK.  You don’t need to know how the watch works when you are at your lowest.  There will come a day when you can handle all that information, but for today, take a nice bath.  Listen to your favorite music.  Read your favorite books.  Call an understanding friend.  Whatever it takes to get through this day, minute, and second.

There has been researching showing that probiotics help with depression as well: scientists found that when mice in the study were put under stress, they developed a reduction in Lactobacillus through the metabolite kynurenine, which is somehow involved with inflammation and was linked to depressed behavior.  Feeding them Lactobacillus almost completely stopped their depressive behaviors.  

All Lyme/MSIDS patients should be on good pro and prebiotics and doing all they can to lower inflammation.  Read here about the microbiome and MSM’s ability to lower inflammation & help heal the gut:

If the depression hangs on, seek help.  Also, if you need to take medication short-term – so be it.  No judgement here.  We are all different and take different things to make it to the other side of health.  But, I encourage you to get to the bottom of things rather than mask it with a pill.  

My experience has shown me that treatment for pathogens is just one prong of our healing journey, and while important, isn’t the end-all.  We must detox.  We must address diet and sleep.  We must learn everything we can about our personal imbalances and weaknesses and seriously address them.  We must address our mental health and all that entails – from lowering our stress to ditching harmful relationships.
Thank you to all the mental health practitioners and patients out there writing about your experiences with Lyme/MSIDS psychiatric issues.  We need to hear what you have to say!

Acute Onset Confusion in Elderly Man – Had Bb

Neuroborreliosis and acute encephalopathy: The use of CXCL13 as a biomarker in CNS manifestations of Lyme borreliosis

Karrasch M, Fingerle V, Boden K, Darr A, Baier M, Straube E, Nenadic I.
Ticks and Tick-borne Diseases, online first, 2017 Dec 11.


We report the case of an 80-year-old patient with acute onset confusion initially suspected to reflect delirium in incipient Alzheimer’s disease.

Cerebrospinal fluid tests revealed an unusually severe form of neuroborreliosis, which resolved following antibiotic treatment. This was mirrored in the measurement of CXCL13, which is suggested as a complementary biomarker.

Clinical implications for screening, differential diagnosis and treatment are discussed.


For more:


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).