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Why You Must Look For and Treat Mold Exposure in Patients with PANS or PANDAS

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Mold Is Not a New Problem

“…The owner of the house must go and tell the priest, ‘I have seen something that looks like a defiling mold in my house.’ The priest is to order the house to be emptied before he goes in to examine the mold, so that nothing in the house will be pronounced unclean.”

Leviticus 14:35-36 (NIV)

People have been living in and around various types of molds for thousands of years, and not all mold exposures are bad. In fact, mold is used to produce foods like bleu cheese and Gorgonzola, as well as prescription medications like penicillin, lovastatin, mycophenolate mofetil, and cyclosporin. Molds are technically types of fungi, and other useful types of fungi include yeast and mushrooms.

However, some types of mold exposures can be harmful to people in several different ways. The Center for Fully Functional Health, we have been the first physicians to directly connect mold exposure to PANS and PANDAS. We discovered this link based upon our experience with our own daughter’s illness and what we have consistently seen in our patients.

This blog will outline the role that mold exposures play in the development of PANS and PANDAS. We will discuss mold testing for your child (and their environment), as well as effective treatments if they have been exposed.

 

close up of wheat grass

How Often Do We Encounter Mold In Our Environment?

Excluding the cheeses and medications listed above, we also encounter molds which can be harmful to our health as environmental contaminants in foods. Grains such as corn, oats, wheat, and rice can all become contaminated with mold. This can happen while it is still in the field or when grain is stored. The main issue with mold contamination of foods is that some of these molds produce poisons called mycotoxins, which can have negative effects on humans.

While it had previously been estimated that up to 25% of the grain supply is contaminated with mold, recent studies using different, more sensitive measurements have found that virtually 100% of grains are contaminated to some degree with mycotoxins.1-3

Coffee beans and peanuts can also become contaminated. One study showed that only 11% of coffee beans analyzed were mycotoxin free.4 And, of course we have all seen visible mold on foods which have been left for long periods of time, such as bread, cheese, and fruit.

Any damp or humid area can harbor microbial growth. This can include molds and other fungi like moss outdoors, while other molds can grow in our homes.

We often think of mold as occurring after a large water leak from faulty plumbing or a damaged roof. But mold may grow in any area where humidity is over 50%, even in the absence of a leak. (We do not recommend whole-house humidification for that reason.) If you’re concerned about moisture in your home, you can easily check humidity levels using a hygrometer, found online for around $20.

 

woman blowing her nose with a tissue

 

How Mold Affects the Body

You may know someone who has allergies to mold. People with mold allergies can develop a stuffy nose, a cough, or itchy eyes when they are exposed to indoor molds. Mold is also a trigger for many people with asthma.5 But the capacity of mold exposure to cause human illness extends far beyond allergies.

Molds primarily harm both animals and humans through the release of mycotoxins, very small organic poisons. These compounds are directly toxic to the nervous system and have been linked to neuropsychiatric disorders and abnormalities on neurological testing.6,7

Numerous articles have also shown mycotoxins impair the immune response.8-13 This “immune deficiency” can lead to longer or more severe bacterial and fungal infections.

In addition to causing the immune system to be underactive, mycotoxins have also been shown to cause elevations of antinuclear antibodies (measured by the blood test known as ANA) and anti-smooth muscle antibodies.8 These results often indicate autoimmunity, a condition where the immune system attacks our own body. This suggests that mycotoxins trigger autoimmunity as well.

Normally, the immune system should be able to increase the immune response, but not so much that autoimmunity occurs. However, mycotoxins change that, causing immune dysregulation where the immune system can be both underactive and overactive.

 

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The Previously Unrecognized and Vital Link Between Mold Exposure and PANS/PANDAS

Years ago, when we first started treating children with PANS and PANDAS , we based treatment on information from researchers at the National Institute of Mental Health, which showed that these disorders started when the immune system attacked not only an infecting organism like Strep bacteria, but also an area of the brain.14

This would then be a case of an autoimmune disorder caused by an infection. The autoimmune attack on the brain in PANS has been confirmed in several studies and it has also been shown that approximately 40% of children with PANS and PANDAS will have an elevated ANA level when tested.15

But after reviewing both the published medical studies as well as the patient data in our own practice, we discovered that a significant number of patients with PANS and PANDAS also have some type of immune deficiency.16 As many as 48% of these children have low levels of immune globulins – proteins that help you fight infections.

In our practice, we have found that a significant number of these children have issues making antibodies when they are vaccinated against common childhood diseases. This is called “specific antibody deficiency.” Most parents of children with PANS and PANDAS will confirm that their children get sick more often than their siblings and get sicker than others in the family when they do catch something.

 

forest path

 

Constant PANS/PANDAS Flares Do Not Have to Be a Fact Of Life

Patients often present to our office after having seen many other physicians. Even if they have seen a physician who believes in PANS/PANDA and have been treated, the child may still have additional flares (episodes of worsened behavior, anxiety, or tics) when they get any minor illness. Parents are often told that their child will get flares for years to come and that this is unavoidable.

This is not the case. A diagnosis of PANS or PANDAS does not have to worsen or persist for years.

Traditional treatments for PANS and PANDAS focus first on treating the infection, most often directed at Strep bacteria. Secondly, most conventional PANDAS physicians will use steroids and/or IVIG to regulate the immune system. 

Finally, these physicians may add psychiatric medications like antidepressants and antipsychotic medications to attempt to control symptoms. (We have found these medications are not very effective and may have unwanted side effects.17)

The problem with this approach is that it fails to recognize the role of toxins – most commonly mycotoxins – in causing the dysregulation of the immune system which starts the entire process. It also offers very limited therapeutic choices.

 

sun rising over the water

A Better Approach to Treating PANS and PANDAS

The reason that we have had success in cases where conventional PANDAS physicians have not is for two reasons.

First, we have discovered that to truly stop PANS/PANDAS in its tracks, you have to do these four things without fail:

1. Identify and treat infections, including tick borne infections, viral infections like Epstein Barr Virus, Strep, Mycoplasma, and Toxoplasmosis. Details about proper testing to help guide therapy can be found here.

2. Remove toxins such as mycotoxins and toxicants, including chemicals like glyphosate, artificial cleaners, inflammatory and processed foods, and other household chemicals.

3. Re-regulate the immune system. This does not always require IVIG. Low-dose naltrexone is a great way to re-regulate the immune system in PANS/PANDAS patients. Read about it here.

4. Break neural loops. These are safety mechanisms which take the form of intrusive thoughts and rituals (OCD) that the unconscious brain makes. They can cause severe anxiety and depression.

To accomplish this, we use our highly effective, proprietary Fully Functional process. This process consists of 5 steps:

1. IDENTIFY: We first identify the factors adversely affecting health. This is done by spending a significant amount of time talking to our patients and their parents.

We also perform laboratory testing to measure inflammation, evaluate the immune system, and identify current or past infections. Advanced testing for tick borne illness and measurement of urinary mycotoxins is a must for PANS/PANDAS patients. The urine mycotoxin test will identify mold exposures in your child, while some other blood testing like C4a and TGFB-1 can also support that diagnosis.

2. REDUCE: We come up with a plan to reduce the things that negatively impact health. We do this by providing families with a detailed plan to remove inflammatory foods. The recipes we provide are doctor-designed and child-approved. We never make dietary changes in children with restricted eating.

Our protocol also helps our patients and their families reduce stress and remove environmental toxins, even mold. We typically use glutathione and oral binders to help remove mycotoxins from patients’ bodies, then rely on expertly trained Indoor Environmental Professionals like those found here to test and remove mold and mycotoxins from the home.

3. OPTIMIZE: Humans are natural detoxifiers. We urinate, have bowel movements, sweat, exhale, process toxins through our liver, move toxins through our lymphatic system, and dream – a means of mentally detoxing. Optimizing these processes is crucial.

We ensure that patients hydrate, move their bowels and heal their GI tracts, sweat, get adequate sleep, do breathing exercises, take nutrients necessary for their liver to work effectively, and work on lymphatic drainage.

4. SUPPORT: We provide personal, structural, and biochemical support, including specialized support for the immune system. Providing support to the family during this challenging time is essential.

5. PERSONALIZE: Although we have a very successful protocol to help start the recovery process, personalization is essential once laboratory values have come back. No two patients are the same.

By applying the Fully Functional framework outlined above, long-term recovery from PANS and PANDAS truly is possible. For information or to make an appointment, please call The Center for Fully Functional Health at (317) 989-8463 or read more about how to become a patient.

References:

1 Bryden WL. Mycotoxins in the food chain: human health implications. Asia Pac J Clin Nutr . 2007;16 Suppl 1:95-101
2 Thielecke F, Nugent AP. Contaminants in Grain-A Major Risk for Whole Grain Safety?. Nutrients . 2018;10(9):1-23 
3 De Saeger S, Audenaert K, Croubels S. Report from the 5th International Symposium on Mycotoxins and Toxigenic Moulds. Toxins . 2016;8(146):1-37
4 García-Moraleja, Font G, Mañes J, et al. Analysis of mycotoxins in coffee and risk assessment in Spanish adolescents and adults. Food Chem Toxicol . 2015;86:225-33.
5 https://www.cdc.gov/niosh/topics/indoorenv/moldsymptoms.html#:~:text=Inhaling%20or%20touching%20mold%20or,(non%2Dsensitized)%20people
6 Bennett JW, Klich M: Mycotoxins. Clin Microbiol Rev. 16(3):497-516, 2003
 7Ratnaseelan AM, Tsilioni I, Theoharides TC: Effects of Mycotoxins on Neuropsychiatric Symptoms and Immune Processes. Clin Ther. Jun;40(6):903-917, 2018
8 Gray MR, Thrasher JD, Crago R, Madison RA, Arnold L, Campbell AW, Vojdani A. Mixed mold mycotoxicosis: immunological changes in humans following exposure in water-damaged buildings. Arch Environ Health 58(7):410-20, 2003
9 Shigesaka M, Ito T, Inaba M, et al: Mycophenolic acid, the active form of mycophenolate mofetil, interferes with IRF7 nuclear translocation and type I IFN production by plasmacytoid dendritic cells. Arthritis Res Ther 22:264, 2020
10 Al-anati L, and Petzinger E: Immunotoxic activity of ochratoxin A. Journal of Veterinary Pharmacology and Therapeutics, 29: 79-90, 2006
11 Assaf H, Azouri H, Pallardy. Ochratoxin A Induces Apoptosis in Human Lymphocytes through Down Regulation of Bcl-x L , Toxicological Sciences 79:2, 335–344, 2004
12 Bulgaru CV, Marin DE, Pistol GC, Taranu I: Zearalenone and the Immune Response. Toxins (Basel). 13(4):248, 2021
13 Wu Q, Wu W, Franca TCC, Jacevic V, Wang X, Kuca K: Immune Evasion, a Potential Mechanism of Trichothecenes: New Insights into Negative Immune Regulations. International Journal of Molecular Sciences 19(11):3307, 2018
14 Chang K, et al: Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. Journal of Child and Adolescent Psychopharmacology 25.1:3-13, 2015
15 Swedo, Susan E., Henrietta L. Leonard, and Louise S. Kiessling:”Speculations on antineuronal antibody-mediated neuropsychiatric disorders of childhood.” Pediatrics 93.2, 323-326, 1994
16 Frankovich J, et al: Multidisciplinary clinic dedicated to treating youth with pediatric acute-onset neuropsychiatric syndrome: Presenting characteristics of the first 47 consecutive patients.” Journal of child and adolescent psychopharmacology 25.1: 38-47, 2015
17 Calaprice D, Tona J: Treatment of pediatric acute-onset neuropsychiatric disorder in a large survey population. J. Child Adolesc. Psychopharmacol, 28(2): 92-103, 2017

Remember to check with your child’s physician before starting any new diet, supplement, or medication regimen. The information in this blog is not intended to be medical advice, and supplements mentioned are not intended to diagnose, treat, heal, or cure any disease.

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