My MCAS Journey – An Unbelievable Transformation

This post starts at the beginning of my MCAS journey and provides the context for this blog – where it started, what has helped me along the way, what has failed miserably, and where I am now. Come along on my MCAS journey!

Timeline of my MCAS Journey

Here is my first blog post at MyInertLife!

birth
normal childhood illnesses
age 12-20 competitive runner and nordic skier
age 20 Lyme Disease onset; stopped running and skiing
age 33-38 Lyme disease flare
age 39 herbal Lyme treatment
age 42 water incursion in home; daughter became disabled
age 43 severe migraines
age 47 became my daughter’s full-time caregiver
age 48 husband had open-heart surgery
age 49 started mold remediation
age 50 moved
age 51 MCAS flare

Highlights of my MCAS journey

When I look back at the highlights of my life what is between the lines is chronic pain, anxiety, depression, desperation, frustration, and mere survival. It wasn’t a clear path, and many roadblocks stood in the way of understanding what was going on with my family’s health.

When I first contracted Lyme disease in my early twenties it was considered a “rare” disease that only people who worked in the woods of the northeast could possibly contract. Even though I spent a lot of time training as a competitive runner and skier in those very woods my doctors didn’t suspect I had Lyme disease. It wasn’t until decades later that a functional practitioner put the pieces together for me and it all made sense.

Lyme disease and mold

I started treating my Lyme disease in my forties with a naturopath using herbal treatments. Herbal protocols and the GAPS diet made a huge difference and I started to regain the ability to exercise.

But then we had a water incursion in our 1930s home that turned our lives upside down. We fixed the leak and thought nothing more of it until I developed debilitating migraines and our daughter abruptly turned into a different person.

PANDAS

Her school refusal was the first clue that something was amiss, followed by a cascade of severe psychiatric symptoms, eating restriction, OCD, and mutism. I gradually transitioned from working full-time outside the home to caring for her full-time, as her symptoms continued to worsen.

We ran through our savings seeing specialists around the country and she was finally diagnosed with PANS and PANDAS. We did functional and holistic treatments to address her symptoms and underlying infections, and paid out of pocket for IVIG (intervenous immunoglobulin infusions), the gold standard in PANS/PANDAS treatment. But the mold toxicity from that old water incursion kept impeding her progress. We knew we had to move to escape the assault on her immune system that the presence of mold kept triggering.

Mold remediation — or not

So just as the Covid-19 pandemic was starting we joined the frantic house-hunting market. As we toured existing construction homes I realized how sensitive I was to mold when I immediately had symptoms of light-headedness, brain fog, and migraines. And it was starting to seem like most old homes on the market had water problems of some sort. It became clear that we couldn’t compete with home buyers who were willing to forego inspections and could snatch homes before the buyers like us who needed to be sure the home was clear of mold.

So we reluctantly started looking at new construction homes, and luckily found one that suited our needs. We traded the old house issues of mold, outdated wiring, and poor insulation for new home issues, including off-gassing construction materials, unshielded wiring, and dirty electricity. And what to do about the porous household goods we owned that were likely impregnated with mold spores!?!

We got rid of about 80% of our belongings, and with the help of Green Home Solutions, we treated the things we kept with a hospital-grade sanitizing product to ensure we weren’t bringing the mold problem with us to the new home. Then GHS provided a comprehensive plan to seal exposed wood in the basement, set up a dehumidification system, and ozone-treated the empty house before we moved in. They “baked” the house to eliminate as many off-gassing volatile organic compounds (VOCs) as possible.

Moving to a new home

The next step on my MCAS journey was moving, and we moved into our new home hoping for relief from a decade of health crises. The new home became a welcome haven for our family, and my daughter began to gain traction with her healing. As her health dramatically improved she finished high school and made plans to start college. And as I discuss in Episode 47 of the Miracle Voices podcast, as her health improved, mine suddenly tanked. The stress of caregiving on top of my underlying chronic Lyme disease, plus moving, caused a full-blown autoimmune condition.

All that time that I was literally keeping my daughter alive my own health issues were somehow suppressed. And when she started to improve I experienced a corresponding decline. But luckily by then, I knew the practitioners to see and I finally received the Mast Cell Activation Syndrome (MCAS) diagnosis that put all of my chronic illness pieces together.

My MCAS journey – My Inert Life

So, that brings me to the purpose of this blog! I named it My Inert Life because with MCAS I’m focused on NOT reacting to external stimuli, environmental triggers, and foods. After experiencing the free-fall crash that put my health into the toilet I’ve spent the last year of my life exploring biomedical techniques, dietary supplements, lifestyle changes, mindfulness tools, and tricks to make life manageable and pleasant. And I’ve found a lot of them!

I aim to share the tips, treatments, and resources that I have discovered for making a life with MCAS not just livable but rich and enjoyable! I’ll be sharing how to reduce reliance on drugs to control symptoms, how to troubleshoot your home for hidden triggers, ideas for traveling with ease from lodging to air purifiers to RVs to keeping food cold on the road, and much more!

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.

MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.

Check out this post on how to manage MCAS.

My life imploded

MCAS is considered progressive, and the alarming onset and cascade of symptoms I experienced at times caused panic about how to live a satisfying life. At one point I could only safely tolerate twelve foods, but now the “allowed” foods on my list have expanded significantly. So I’ll be imparting the shortcuts I’ve found that can aid food prep and safe food storage, knowing that everyone’s triggers are individual to their illness.

My Inert Life is a place of hope for people with MCAS and other chronic illnesses. With managed expectations, advance planning, and knowing your triggers you can react to less and thrive more! And have an Inert Life!

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Where I am now on my MCAS journey

Now, in 2023, I’m doing a lot better than I have in decades. My chronic pain is controlled. Immune health starts in the gut, and I’m in the midst of treating SIBO, or small intestine bacterial overgrowth, and that promises to make my MCAS reactions much less pronounced. When you calm down your systemic immune response it gives mast cells the signal that all is okay. They can chill.

I’ve still got a ways to go in my healing journey. I still have symptom flares and I’m still managing the daily challenges of medications, supplements, and a special diet. I still have to be careful when I eat out, and I have to watch out for fragrances, mold, and EMFs wherever I go. My MCAS journey continues in the management phase.

I’m excited to share what I’ve learned on my MCAS journey. So I’ve written over 100 posts on the tips and tricks I’ve learned along my MCAS journey, from recipes to supplements, to how to camp/travel with MCAS, to what to wear. Read on for how I’ve learned to thrive with My Inert Life!

Tell me about your journey with MCAS!

I’d love to see your reply below!