A “Splendid” Approach to MCAD Management

Back in August of 2019, I was asked to prepare a presentation for a TMS (The Mastocytosis Society) patient support group meeting in Denver. The idea was to cover holistic strategies for MCAD management in a couple of hours—a monumental task in my mind, but I took my best stab at it!

In order to help the audience remember the different components to holistic care, I came up with the acronym “SPLENDID” as I believe it’s important for patients with MCAD (and other types of chronic illness) to address the following areas:

I’ve since been asked to re-share this information for a broader audience, so I’ve decided to break down each letter of the acronym in individual blog posts, since it’s a lot of information.

I truly believe that addressing each of these areas is key to finding healing from chronic illness, and focusing on these areas can also help reduce that symptomatic baseline of MCAD-associated symptoms. So, without further ado, let’s dive into the first letter, “S”: Stressors to Health!

“S”: Stressors to Health

This category is probably one that I am most passionate about, because if the body is dealing with a lot of health stressors that are not addressed, it’s an uphill battle and more of a Band-Aid approach of masking symptoms as opposed to helping the immune system address and remove the underlying root problems.

There are many different types of stressors to health. I consider the following list to cover some of the major ones that seem to affect patients with MCAD:

• Toxic overload
• Radiation and EMFs
• Biotoxin illness / Mold
• Bacterial infections
• Viral infections
• Gastrointestinal issues

Toxins

Toxins are so important that I’ve actually given them their own category in the “SPLENDID” acronym (D for Detoxification) so we will dive more into that one in a future post.

Radiation and Electromagnetic Fields (EMFs)

Hair dryers, power lines, shavers, lamps, coffee makers, vacuum cleaners, dishwashers, electric wiring, electric blankets, microwaves, cell phones, laptops, smart phones, e-readers, smart watches, iPads, clock radios, refrigerators, wireless internet, home smart meters, and wireless ear buds are all examples of regular everyday devices known to emit electric and magnetic energy into the environment (though this list is certainly not all-inclusive).

In a previous blog post I analyzed some literature to determine whether these types of energy influence the general population as well as patients who are chronically ill. (Click here for a link to the blog post.) For a quick summary, in 2006 an article by Cox/the World Health Organization noted headaches in 85% of patients following cell phone use, and described frequent reports of fatigue, dizziness, nausea, itching, redness, burning, and cognitive symptoms following EMF exposure. Belyaev et al. (2009) found altered lymphocyte function for up to 72 hours after cell phone use. Kesari et al. (2013) noted an association between cell phone radiation and brain tumors, leukemia, other cancers, neurodegenerative disease, immune system issues, cardiovascular symptoms, infertility, and allergic responses.

Researcher Olle Johannson has conducted studies evaluating the influence of EMFs on mast cells. In 2009 he published a study noting that EMFs may increase the quantity of mast cells, their migration/infiltration, and rate of degranulation in patients with electro-hypersensitivity.

Biotoxin illness / Mold

Mycotoxins are a type of biotoxin that is the by-product of fungi (mold). Chronic Inflammatory Response Syndrome (CIRS)  is an “acute and chronic system inflammatory response syndrome acquired following exposure to the interior environment of a water-damaged building with resident toxigenic organisms, including, but not limited to fungi, bacteria, actinomycetes and mycobacteria as well as inflammagens such as endotoxins, beta glucans, hemolysins, proteinases, mannans and possibly spirocyclic drimanes, as well as volatile organic compounds.” (www.survivingmold.com)

Mold is a difficult trigger to avoid. In 2005 the National Resource Council published a study noting that 43% of buildings had current water damage, 85% had past water damage. Mold can grow within 24-48 hours of water damage occurring. Buildings that have humidity above 50% are also at risk.

Not all individuals are susceptible to illness from mold. Human leukocyte antigens (HLA’s) are found on the surface of nearly every cell in the human body. They help the immune system to differentiate between body tissue and foreign substances. There is an HLA-DR genetic makeup associated with mold toxicity risk, which impacts ~25% of general population, explaining why most family members or co-workers can be in the same environment and have no health issues alongside someone who is really ill.

HLA-DRBQ gene carriers do not make the antibodies needed to deactivate and remove mold toxins. When they’re not tagged and removed by the body, they circulate freely. This creates a vicious cycle as the body recognizes foreign substances but is unable to effectively clear them, leading to immune system overactivation. Mold toxins are lipophilic, and their molecular structure consists of fatty acid molecules, so the toxins tend to migrate and deposit in the brain, which can lead to alterations in neurons and hormone production alongside neurological symptoms. There are many symptoms associated with CIRS and biotoxins; Dr. Shoemaker’s website is a great resource (www.survivingmold.com).

Unfortunately, there is no silver bullet test to help confirm the presence of mold in a building (though some, like the ERMI, are better than others), nor is there a perfect test to help determine if a patient is experiencing symptoms from mycotoxins. However, Visual Contrast Sensitivity (VCS) testing is available online (www.survivingmold.com) and positive tests are 92% specific for CIRS. Biotoxins affect the optic nerve and the VCS test measures your ability to see details at low contrast levels. Once it’s been identified that a patient is suffering from CIRS, there are a number of steps and treatments necessary to help remove the biotoxin build-up, restore proper organ and immune system function, replenish depleted nutrients, and eliminate re-exposure; this treatment should be guided carefully with the help of a medical professional who is well-versed in CIRS.

Bacterial Infections

Examples of common bacterial infections include:

• Streptococcus (“strep”)
• Staphylococcus (“staph”)
• Mycoplasma pneumoniae
• Borrelia burgdorferi (“Lyme disease”)
• Other vector-borne bacterial and parasitic issues (bartonella, babesiosis, anaplasmosis, ehrlichiosis, etc.)
• Gastrointestinal: clostridium difficile (“C. diff”), Escherichia coli (“E. coli”), salmonella, helicobacter pylori (“H pylori”)
• Less common: meningitis, encephalitis, tuberculosis, alpha gal transmission via tick (sugar molecule, not “bacteria”)

Bacterial infections can trigger an increase in overall mast cell activation and many can become stealthy chronic infections that are undetected by conventional medical testing. It’s very important to address any and all bacterial infections with the help of a functional medicine or naturopathic provider.

Viral infections

Examples of common viral Infections include:

• Epstein-Barr virus (EBV)
• Varicella-zoster virus (cause of chickenpox and shingles)
• Cytomegalovirus (CMV)
• Human papilloma virus (HPV)
• Less common: Powassan virus, hepatitis
• Mosquito-borne: dengue, yellow fever, West Nile
• Additional “gray area” health stressors
• the thyroid; adrenal and reproductive hormones

Chronic viral infections can also wreak havoc on the entire system, and their detection and treatment should be a priority with your medical team. Functional medicine and naturopathic providers typically also address these conditions and organ systems.

Gastrointestinal issues

Examples of common gastrointestinal issues include:

• Parasitic and protozoal infections
• Dysbiosis, SIBO
• Difficile
• Pylori
• Candida albicans
• Digestive enzyme deficiency
• HCL deficiency

Gut health is tremendously important and is almost always a factor in the health of patients who are chronically ill. Functional medicine providers and naturopaths can be another great resource to help identify gastrointestinal issues and restore proper motility and microbiome function.

How do we address underlying “root issues” and health stressors that increase the physiologic burden on the system?

Unfortunately, we don’t have a large-scale study investigating the prevalence of these health stressors in the MCAD population. Most patients with chronic illness experience a smattering of viral, bacterial and gastrointestinal issues in addition to potential hormonal or adrenal imbalances that need to be addressed with the help of a professional. For many patients, the system cannot recover until everything is addressed in a specific fashion.

As you’ve probably noticed by now, I am a huge proponent of functional medicine doctors and/or naturopaths who can address “root issues” like CIRS, viral and bacterial infections, gastrointestinal health, and CIRS/biotoxin illness as well as provide resources for detoxification strategies, nutrients via supplements or infusion, EMF reduction, etc. I think that this area is a crucial starting point for patients with MCAD; diving into treatment without addressing the health stressors first will hinder the body’s ability to heal.

These areas need to be addressed carefully and with a customized patient-specific plan in play, and it’s not an overnight fix by any means. In the example of a patient beginning a treatment plan of binders to remove mycotoxins or heavy metals, if they have not addressed gut health/motility issues or the function of other detox organs, the treatment can actually be dangerous and toxins can be reabsorbed. Again, working with a reputable medical provider (and one who is well-versed in MCAD) is essential. Patients with MCAD may not tolerate supplements (especially those with multiple ingredients) and there are many other reasons that this part of the process can be lengthy and require patience and trial and error.

One of the biggest things that I notice clinically is that patients tend to skip the “S” altogether and want to jump right to mast cell-specific treatments. Of course, many patients do need to be on some combination of mast cell medications and/or supplements initially to help them stabilize, but the ultimate goal is to remove the source(s) of what’s essentially up-regulating the system, so that the entire body is less taxed and better able to heal (while consequently needing to utilize less prescription/over the counter options). Some patients spend a lot of time and money focusing on one or two treatment approaches for things like diet or the nervous system, but again, without first addressing the underlying health stressors that are triggering a chronic state of dysfunction and inflammation, it tends to be a frustrating uphill battle with minimal results.

While the rest of the letters in the “SPLENDID” acronym are not in any specific order, I would argue that the “S” should be a big priority to consider first. The bottom line is this: Patients with MCAD should prioritize addressing the possibility of health stressors including toxic overload, radiation and EMF’s, biotoxin illness, bacterial infections, viral infections, and gastrointestinal issues early-on in their healing journey.

Stay tuned for the next blog post on “P”: Pain!