Rethinking Treatment of PANDAS and Similar Neuro-Immune Conditions

Functional Treatment of PANDAS

Rethinking the way we treat complex, neuroimmune disorders

The link between neurological conditions and infections is poorly understood, but it is not a new theory.

Microorganisms such as Streptococcus sp. have the ability to cause and worsen various psychological conditions. One common condition or syndrome is PANDAS.

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Generally, PANDAS is when neurological symptoms present following acute or persistent Streptococcus infection. PANDAS has been linked specifically to infection with Streptococcus pyogenes, a group A beta-hemolytic streptococcus (GABHS) known to contribute to neurological tics and obsessive-compulsive disorder (OCD).

Over the years, there has been debate as to whether PANDAS was actually a distinct phenomenon, but is now generally accepted to exist and some mechanisms have been suggested. If you have never heard of PANDAS, it is because current medical diagnosis is often reflective of OCD or other specific neurological presentations.

What is the Underlying Mechanism?

What we now understand regarding PANDAs and its variants may actually connect a functional cause to why the same infection may lead to differential effects. What appears to link these disorders together is immune overactivation. Immune overactivation can happen with acute and chronic infections, but can be triggered by other mechanisms as well.

Functional medicine practitioners are very careful not to pigeonhole themselves with the need to identify a specific diagnosis or mechanism. This is because a practitioner can miss the forest for the trees if he or she focuses on a specific presentation of symptoms as opposed to what is going on functionally below the surface. In short, they focus on patterns instead of individual mechanisms.

In PANDAS, the mechanism is believed to be autoimmune in nature – a process known as molecular mimicry.

Molecular mimicry is when antibodies intended for foreign proteins and invaders may cause lesions and pathology in healthy tissue. (1). PANDAS is believed to be caused in part by molecular mimicry – the neurological symptoms being a result of GABHS antibodies acting against an individual’s basal ganglia and neural tissue.

Other Presentations Due to a Common Underlying Cause

Molecular mimicry is not a new theory, and while seen in similar disorders, it is not limited to neurological conditions.

Sydenham’s chorea (a movement disorder) is also known to present following acute infection with Streptococcus (2). Likewise, rheumatic fever occurs when GABHS antibodies cross-react with multiple tissues such as the heart, joints, and skin. Lyme disease may also present with various neurological presentations – likely through similar mechanisms between the activity of the spirochete and the numerous co-infections that inevitably come along for the ride.

Lyme disease is known commonly as the “Great Imitator” because of the wide variety of symptoms it can present – including neurological symptoms. It can be missed for months and years before a correct diagnosis is often made.

As for PANDAS, symptoms can also be diverse – ranging from ritualistic behavior, urinary urgency, hyperactivity, separation anxiety, poor handwriting and school performance, impulsivity, mood swings, oppositional defiant behavior, inattention, movement disorders and more.

The range of symptoms may become a diagnostic nightmare for a clinician or parent who wants a specific diagnosis. It can be like identifying a needle in a haystack. It can be incredibly frustrating for a parent when they must visit multiple specialists, only to receive multiple explanations – each specialist’s diagnosis being as believable as the last.

This is where I believe a functional healthcare lens can be useful in these cases as opposed to our current “name it, blame it, and tame it” approach of textbook medicine. I believe many can waste valuable time “diagnosis shopping” when in the meantime they could be addressing functional causes.

Because of this diversity, some suggest widening the PANDAS spectrum to include attention deficit/hyperactivity disorder (ADD/ADHD) (3); and, additional researchers have pointed out that the same cross-antibody reactions to neurons have been linked to autistic behavior as well (4).

What seems to link all of the symptoms and variants is a common theme of immune overactivation affecting nerve tissue. The immune activation presents a functional, underlying CAUSE, and, is something we can support naturally. In some cases, neurological presentations are the initial and sometimes ONLY presentation of such immune imbalances (5).

 

When a diagnosis evades you and your doctors, it is time to consider functional links.

 

It is still unclear as to why some children acquire PANDAS, others acquire PANDAS-variants or other neurological presentations, or while many maintain health following an infection. Risk, particularly autoimmune risk, can be mediated by genetic differences, breastfeeding history, co-morbidities, and a full-range of epigenetic mechanisms that scientists are still only in an early stage of an understanding.

Check out a great discussion on why focusing on the diagnosis can be so problematic. Dr. Jeffrey Bland, PhD is the “Father of Functional Medicine”, and launched a new must-read book this week on The Disease Delusion (affiliate).

How Does A Functional Approach Work?

Function can be measured on a spectrum of what’s “healthy” and “normal” in anyone, no matter any genetic susceptibility of acquiring a disorder. “It’s Genetic” leaves us with few clinical options other than to mask the symptoms with medical intervention, or to wait for symptoms to worsen to the point where surgical intervention or more aggressive drug therapy is necessary.

As confusing as this may all sound, it doesn’t have to be. I can look to foundational health issues (stress, gut function, immune triggers, etc) and often see many overlapping symptoms improve when I address these factors. My case history with the patient often lets me know where to tug on the web of physiology. If I get stuck, there’s specialized testing available.

When you start with a focus on function, true integrative care can progress. This is because functional medicine is a bridge between alternative and conventional medicine, not a substitute.

 

Conventional Treatment of PANDAS

It can be a relief when you finally identify a name and cause for your condition, but still can become incredibly frustrating when you run into problems and disappointment with the available treatment..

Conventional treatment for PANDAS may include penicillin treatment, immunoglobulin therapy, plasmapheresis as well as tonsillectomy.  The rise of antibiotic resistance, however, as well as the questionable effectiveness of both plasmapheresis (6) and tonsillectomy (7), have made outcomes complicated.

So while conventional approaches may be limited, alternative approaches may offer some clues to what’s missing in care.

For instance, science has discovered new insights into how gut function, gut bacteria and yeast influence neurological health. Simply put, when you work on improving digestion and the balance of gut flora, you will inevitably have a functional effect on immune and nervous system health.

While the problem may be in the body’s nervous tissues, the functional cause may come back to the health of the gut, acute and chronic stress, blood sugar regulation and more – in a presentation that will be unique per individual.

Opportunities in Functional Nutrition

Extracts from food, botanicals, and probiotics may have functional properties that help promote healthy levels of not just Strep spp. but other infectious agents as well including molds, viruses, fungi and bacteria. Many can be used safely as adjuncts to conventional medical treatment, potentially lessening adverse outcomes and improving efficacy. The limitations are doctor education on natural supplements, as well as out-of-pocket costs for supplements.

An extract from coconut oil known as monolaurin, for instance, has been shown to limit growth of Groups A, B, F & G Streptococci, Mycobacterium in vitro, as well as other bacteria, viruses, fungi & molds. Aside from its popular use for herpes simplex infections, the flu, as well as yeast overgrowth, numerous anecdotal reports from the work of Dr. Jacquelyn McCandless and the late Dr. James Upledger, suggest improvements in behavior in individuals with autism. Many other doctors continue to report positive outcomes with chronic Lyme disease presentations as well.

I personally educate doctors and recommend the Lauricidin® brand (where I work as a full-time consultant) as it was developed by the discoverer of monolaurin, Dr. Jon J Kabara, PhD. It is also available in capsules by a few other companies. But other extracts containing berberine, oregano oil, colloidal silver and more have helped many individuals. (As always, consult with your health professional on proper use of natural herbs, supplements as well as how they interact with medical drugs!)

Medicine and science struggle to establish PANDAS, PANDAS-variants, and related disorders as distinct diseases worthy of clinical intervention. They argue whether one disorder is a sub-type of another, or whether one treatment is more effective than the other.

I also stress that while correct medical diagnosis can be useful, you can still promote functional health naturally and safely using alternative medicine. For a PANDAS or PANDAS-variant situation, my goal as a wellness practitioner would be to maintain and support immune system health. That support may range to gut health, gut health, detoxification support and more.

Here are some of the possible functional triggers I may screen for:

  • Acute and Chronic Infections (Viruses, Bacteria, Fungi/Yeast)
  • Allergies/sensitivities (IgE and IgG-mediated reactions, Food, Chemicals, Environmental toxins, Household products, etc)
  • Chronic Stress (Cortisol, DHEA, and other precursor hormones)
  • Leaky gut/dysbiosis (Creates general environment for hypersensitivity reactions)
  • Exposure to heavy metals and toxins (Can trigger autoimmune presentations as the body resorts to last ditch effort to clear away toxins by damaging otherwise healthy tissue)
  • Poor Detoxification/Liver and Kidney Clearance (methylation, liver function, hormone dominance, etc)

All of the above have been linked to changes in behavior, mood, autoimmune symptoms and more depending on the patient and their unique circumstance.

Additionally, non-medical strategies may be effective along the full spectrum of disorders, both before medical intervention is necessary, or at the very least, alongside medical interventions.

While my goal is not to treat, diagnose, prevent or cure PANDAS and related disorders, it is to optimize function of biological systems using diet, behavior, lifestyle and nutritional strategies. In effect, I look to promote and maintain health, instead of screen, treat and manage existing disease.

It sounds simple, but it shows how we must rethink how we manage complex disorders. The quality of questions we ask determines the quality of the answers we receive.

 

 

 

 

By | 2017-05-21T18:27:54+00:00 May 5th, 2014|Health Topics, Immune Health|16 Comments

16 Comments

  1. Carolyn Ford January 6, 2015 at 10:34 am - Reply

    As paternal grandmother of a grandson with Pandas, wondering if any of my conditions relate to his condition. Type l Diabetes (age 47), extreme Pernicious Anemia, and. Stiff Persons Syndrome. I hope not. Please let me know. I would be most interested. Or if you c could help my conditions. I take Clazapam, Gabapenton, and Tiazine sometimes. Also Cymbalta. Thank you for your info and help. Carolyn Ford, Jace Ford’s Grandmother, U of Utah

  2. Alexander Rinehart January 11, 2015 at 2:04 pm - Reply

    On the surface, it would be tough to draw a connection as there are way too many variables. Functional medicine ultimately offers an algorithmic checklist of functional factors that apply to common conditions. With that, two people with very similar presentations, could have very different paths of how they got to the same point. I hope that helps and offers some peace of mind.

    • Yessi March 25, 2015 at 5:53 am - Reply

      Functional medicine has given solace to the unanswerable health conditions. Rather than a ludicrous “nothing is wrong” approach from doctors who specialize in narrow areas of the body, functional medicine seems to acknowledge the mind, body and spirit, and really take people seriously when they don’t feel well. For people with Lyme and PANDAS it is really important to “check in” on every organ and acknowledge that they are all connected. I am concerned that if the mainstream medical community does dive into Lyme and PANDAs research, they will take on the tactic to solely kill and leave people immune suppressed or worse off.

      • Thanks Yessi, well-said. By far, Doctors do look out for the best interests of their patients, but their lens is only as good as the questions they are taught to ask and the tools they are told to have in their toolbox. The “system” and “culture” of conventional medicine teaches doctors to ask certain types of questions, and stack the toolbox in a certain way. The whole culture of “diagnosis” also puts consumers at a “victimhood” disadvantage as it labels them as “sick” as “different” and needing medical care. Their diagnosis becomes their identity and that can be dangerous.

        The research is also biased by industry-funded research and the guidelines that come out of it are often tainted. The war on cholesterol that recently ended, really was a result of a successful soybean lobby (followed by the very successful statin industry). Oh, and the patents on the original statin drugs ended in 2012, so it’s funny that in 2015 now the war on cholesterol suddenly ends.

        I’d be careful to judge the doctors and transcend the urge to talk about the conspiracy theories no matter how true or untrue they may be, but what is truly going to go “viral” is to continue sharing the wide success of functional medicine and when this lens is applicable. On the same breath, give conventional medicine its credit where credit is due when it comes to managing acute trauma and acute disease states.

        We may lose credibility if we spend our time discrediting things rather than crediting the things that do work. As a result, the things that do not work, will lose their luster because they are being drowned out by the positive discussions.

  3. Karen January 27, 2015 at 7:58 pm - Reply

    So, I’ve read a lot about having your PANDAS child switch over to a gluten free diet. Seems to be a trend. Do you believe that all PANDAS should be on a gluten free diet, and if so, why is that?

    • Alexander Rinehart February 1, 2015 at 11:47 am - Reply

      Hi Karen,

      It depends, a good portion of individuals can benefit from a gluten-free, or grain-free diet, but it does not mean everyone. One way to determine if you may benefit specifically from a gluten-free diet is to check to see if the child carries the genetic markers HLA DQ2/DQ8, this is typically done by a simple cheek swab (may not be available in all states). 95% of individuals with Celiac disease have the markers, but just having the markers just means that you are at higher risk of a gluten sensitivity. If the child is negative for the markers, a gluten-free diet may not be necessary for them. The easiest and most affordable way to tell is to go through a 3-4 week complete 100% elimination of gluten-containing foods and products and if there is symptom improvement that then comes back upon reintroduction, that’s a “positive” test. Some attribute this to “placebo’, but gluten is not the only protein in wheat that can be problematic, there are up to 24 antibodies to wheat that could be active. Standard screening only looks at 2 of those 24 antibodies. I discussed this more directly in a previous article: http://dralexrinehart.com/nutrition-benefits/celiac-disease-blood-tests/ With children, it can also be tricky because they may need to be gluten free, while a parent may not be…it ultimately becomes a family decision as it’s difficult for just one member of the family to be gluten-free.

    • Alexander Rinehart, DC, MS, CNS September 7, 2016 at 12:21 pm - Reply

      It’s been shown that even in the absence of a true sensitivity or allergy, gluten and wheat in general is poorly tolerated by the gut and irritating – this intolerance and irritation causes leakiness in the gut lining, and therefore increases susceptibility of other allergies/sensitivities beyond just wheat/gluten itself. It is somewhat of a “gateway drug” to intestinal issues. It was not until relatively recently that Non-Celiac Gluten Sensitivity was recognized, and its mechanisms elucidated: http://gut.bmj.com/content/early/2016/07/21/gutjnl-2016-311964.full

  4. Amy Beaver February 22, 2016 at 6:04 pm - Reply

    My daughter at age 19 fell flat in the floor while walking into her room. She lost deep tendon reflexes several hours later. Initial diagnosis Guillian Barre’. Two days later feet reflexes began to faintly return, GBS ruled out, Transverse Myelitis considered, no enhancing lesion found. Three weeks later after IGG and steroids was walking with rehab. Four months later had flu with fever 104 for 5 days, 11 days later had lower leg weakness unable to walk again for two weeks, told it was conversion disorder.
    This pattern continues febrile illness followed by lower limb weakness… Could it be molecular mimicry???

    • Alexander Rinehart, DC, MS, CNS May 13, 2016 at 9:38 am - Reply

      HI Amy,

      Molecular mimicry is just a mechanism, you want to look at potential allergies/sensitivities or underlying infections beyond Group B Streptococcus that are possibly creating the molecular mimicry/immune overactivation. It can be like finding a needle in a haystack, but the principles of promoting a balanced immune system can remain the same no matter what the “needle” is.

    • Alexander Rinehart, DC, MS, CNS September 7, 2016 at 12:02 pm - Reply

      This would need to be evaluated by a health professional.

  5. James May 13, 2016 at 2:44 pm - Reply

    Excellent article. As I was reading your article the ideas that came to mind were food allergies, leaky gut and autoimmune disorders. Leaky gut and autoimmune disorders can for some be traced directly to food allergies. I know your article is limited in scope but it at least gave a parent the information about what questions to ask.
    For over 20 years I have had parents ask for help about problems now called PANDAS The first thing the parents were told is to remove all dairy, wheat and soy from the diet. This alone helped many children without further intervention.

  6. Pamela Prestridge July 7, 2016 at 3:39 pm - Reply

    I have to say, this article has probably saved my (7) year old granddaughter and my entire family to be honest. To keep it short, she has all the Pandas symptoms…. ranging from ritualistic behavior, urinary urgency, hyperactivity, separation anxiety, poor handwriting and school performance, impulsivity, mood swings, oppositional defiant behavior, inattention, movement disorders and more. Back in August 2006 my entire family had flu like viruses and then suddenly had anxiety attacks, IBS, headaches, body aches, etc. My granddaughter was obviously born with the virus. She’s had about 50 blood tests done on her in the past month and nothing has come back wrong. So, her pediatrician has her scheduled to have an MRI(8-30) they have to put her to sleep and see a pediatric neurologist(9-1).
    After reading this article, I purchased 1,000 mg Nature’s Way Coconut Oil Capsules and we have all been taking them for about a week now. I would really like to get the monolaurin the Lauricidin brand, but would like a sample first before spending $35 on it. Is there any way I can get a sample for my family to take?

  7. Courtney August 3, 2016 at 7:58 pm - Reply

    Hi.. My son was diagnosed with pandas or pans 4 years ago. He has been on amoxicillin for four years on and off depending on his symptoms! He had mono when he was 4 and about a month passed and his pandas symptoms started. This has been a long rough road… I feel like his antibiotic is no longer working as well. So I am getting desperate!!! He also takes probiotics, turmeric, and vitamin c. He also does not eat any type of casein (dairy) bec we did testing and he does not metabolize it. He has some allergies to outdoor grasses and mold. His pandas used to be seasonal but we feel his symptoms are all year long now:( I am feeling desperate bec I want to help him!! It is heart breaking to see your 8 year old worry and become anxious for no reason. Thank you in advance for your time. He has also taken acyclovir bec his Varicella Zoster IgG was 4000z

  8. Amanda April 4, 2017 at 2:21 pm - Reply

    My son recently was diagnosed with PANDAS. He started showing symptoms late October after the stomach flu. His symptoms are anxiety,fears,phobias,tantrums, handwritting changes, extreme seperation anxiety, screaming in pain which we took him to ER twice. We recently found out our condo were renting has a mold problem. I found an article that mold can be a PANDAS trigger! We moved out of condo one week ago and he is doing better. What are yoir thoughts on mold as a trigger for PANDAS?

  9. […] I also gradually added digestive enzymes and probiotics (being careful to avoid strep strains) to address the accompanying gut issues. Immediately, things were better. Literally overnight, we could get through homework without huge […]

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