This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Monday, March 17, 2025

Mast Cell Disease and Long COVID (aka PACS)

Long COVID and MCAS
Post-COVID Conditions: Information for Healthcare Providers
This is the CDC's current guidelines for treating Long COVID and they specifically mention MCAS as a possible cause of Long COVID symptoms that should be addressed.  They do not give information about diagnosing and treating MCAS however (here is the site they link to for more info about MCAS).

Missouri doctors make discovery about possible cause of long COVID
"Dr. Leonard Weinstock, a gastroenterologist at Missouri Baptist Medical Center, and others found that mast cell activation symptoms were increased in long COVID-19 patients.  Weinstock and his team hypothesized that the mast cell activation could cause long COVID-19 symptoms. They also believe that long COVID-19 symptoms could be mitigated by preventing mast cell activation."
The study referenced in this article can be found here.

Immunological dysfunction and mast cell activation syndrome in long COVID
"Long COVID-19 is the consequence of multiple immune system dysregulation, such as T-cell depletion, innate immune cell hyperactivity, lack of naive T and B cells, and elevated signature of pro-inflammatory cytokines, together with persistent severe acute respiratory syndrome-coronavirus 2 reservoir and other consequences of acute infection. There is an activated condition of mast cells in long COVID-19, with abnormal granulation and excessive inflammatory cytokine release. A study by Weinstock et al. indicates that patients with long COVID-19 suffer the same clinical syndrome as patients with mast cell activation syndrome (MCAS). Diagnosis and treatment of MCAS in patients with long COVID-19 will provide further symptomatic relief, and manage mast cell-mediated hyperinflammation states, which could be useful in the long-term control and recovery of such patients."

Mast cell activation symptoms are prevalent in Long-COVID
"In the present study, there was a high prevalence of MCA symptoms in LC patients prior to MCAS treatment. The symptom data and spider web plots illustrated that LC patients’ symptoms are virtually identical to those experienced by MCAS patients. These results support, but do not provide definitive proof of, our earlier hypothesis that LC might often arise out of a SARS-CoV-2-driven provocation of primary or secondary MCAS. Theories to explain promotion of MCA in LC include: 1) complex interactions of stressor-induced cytokine storms with epigenetic-variant-induced states of genomic fragility to induce additional somatic mutations in stem cells or other mast cell progenitors; 2) cytokine or SARS-CoV-2 coronavirus activation of mast cells and microglia; 3) dysregulation of genes by SARS-CoV-2 coronavirus leading to loss of genetic regulation of mast cells;  4) development of autoantibodies which react with immunoglobulin receptors on mast cells,  and 5) increase in Toll-like receptor activity by the coronavirus.  

In this study, MCA symptoms were significantly increased in LC. Uncontrolled, aberrant mast cells may in part underlie the pathophysiology of LC. Inflammation caused by COVID-19 is complicated, and other immune disturbances that have been seen in the acute infection such as excess dysfunction of the macrophage and serotonin release from platelets might or might not play roles in LC"

MCAS activated by Long COVID or PACS or by MIS-C or PIMS and MCAS activated by Vaccines or by Post Vaccine Syndrome: CRITERIA FOR CLINICAL DIAGNOSIS
"In Long COVID or Post-Acute COVID Syndrome (PACS), in Multisystem Inflammatory Syndrome in children (MIS-C or PIMS) and in Post Vaccine Syndrome, in addition to the symptoms of Hypoperfusion, Hyper-coagulability and Microclots (HHM), it is very important to identify the symptoms associated with Hypersensitivity (HS), Allergies, Histaminosis and Mast Cell Activation Syndrome (MCAS) which are also a frequent cause of persistent symptoms. But, several of the patients who present persistent symptoms after having COVID or MIS-C are not diagnosed in a timely manner for Histaminosis, Tryptasemia, , mast cell activation disorder (MCAD), MCAS, and several years may pass and they may even be admitted to a hospital or psychiatric center. with a treatment that does not correspond, so we have considered it convenient to disseminate for free the criteria that we have developed, which have taken as reference the current International Consensus Criteria for MCAS, which gives a high level of support for your application. The references of the scientific publications taken into account are available in the document at the following link: https://www.researchgate.net/publication/376047625 In a similar way to what occurs in Long COVID or PACS and in MIS-C or PIMS, vaccination against COVID can cause the activation of an MCAS in a patient who did not have it, or the enhancement of an already existing MCAS, therefore we have included the diagnosis of MCAS activated by COVID Vaccines or by Post-Vaccine COVID Syndrome, and we must mention that there is a significant number of these cases without, to date, having agreed upon and disseminated criteria for their adequate diagnosis and treatment."

 


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