Fall Health Update

Here is my fall health update after a summer of solo backpacking!

I have Mast Cell Activation Syndrome (MCAS) and for years I could not exercise regularly. I had exercise intolerance and heat intolerance, and my body reacted to many “normal” stimuli like tight clothing (think yoga clothes), friction (like from a bike seat), sunshine (I would get a rash from sun sensitivity), and getting out of breath triggered a spiral of tachycardia and mast cell degranulation.

At my worst point a few years ago I could only walk about 50 yards without pain.

As I’ve chronicled my MCAS journey on this blog I’ve shared the many medications and supplements I’ve tried and what seemed helpful, from homeopathy to methylene blue, herbals to prescription drugs. I’ve also discussed the various treatment options I’ve tried, from a chi machine to frequency-specific microcurrent, acupuncture to nervous system retraining, and sound healing to infrared light.

I’ve tried many different diets to eliminate inflammation, control how my body produces and reacts to excess histamine, and create a healthy microbiome.

In this post, I’ll share my current health status and the top three things that have helped me heal the most.

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. It can cause severe, disabling symptoms every day, including potentially fatal anaphylaxis. MCAS often occurs with other chronic conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Managing MCAS is challenging because many healthcare providers are unaware of it, and diagnostic tests can be unreliable. Treatments involve using antihistamines, mast cell stabilizers, and avoiding triggers. Check out this post on how to manage MCAS.

The bucket theory

The bucket theory simplifies understanding symptom reactions with MCAS. Imagine your body as an empty bucket you don’t want to overflow. Reactions to various stimuli fill the histamine bucket at different rates, forming the total histamine level (how full your bucket is). More histamine means more symptoms. By managing triggers, reducing exposures, and taking medications and supplements, you can control your bucket’s level.

Know your typical symptom progression

Knowing your symptom progression in a symptom flare is the key to developing your rescue plan. This post discusses how to recognize your symptom progression so you are prepared to address those symptoms.

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Where I’ve been

My MCAS was triggered by a combination of gut dysbiosis (causing leaky gut), trauma from caregiving and repeated concussions, toxic mold exposure, and several chronic infections.

About fifteen years ago I started healing my chronic infections, which included Lyme Disease and co-infections. Over the last three years, I have systematically addressed SIBO, parasites, trauma, vagus nerve injury, and mold detoxification.

In the years since 2020, I started eating a low-histamine diet, and I experimented with Keto, intermittent fasting, and drastically reducing oxalates, sulfur, salicylates, and FODMAPS.

A year ago the list of foods I could tolerate was incredibly small: Zucchini, turkey, kitchen herbs, lime juice, lettuce, pumpkin seeds, fennel, sea salt, butter, chamomile tea, and rooibos tea. I worked hard to find different ways to prepare these ingredients so that I had some variety in my diet.

In the last ten years, our family has spent over $100,000 on supplements for three chronically ill family members. A year ago I was taking over 40 supplements and medications.

Where I am now

During 2024 I’ve gradually been able to increase the number of foods I can tolerate so that now I only limit gluten, sugar, and garlic.

By healing my gut, and retraining my nervous system I’ve gradually reduced the number of supplements and medications I am taking for inflammation, gut health, and mast cell stabilization. Now I only take:

• Molybdenum (150 mg) for sulfur dysregulation
• Digestive enzymes for gut health
• Butyric acid for gut health
• Turmeric for inflammation
• Zinc picolinate for mast cell stabilization
• Vitamin D3/K2 (5000 IU) for mast cell stabilization
• Nettle Quercetin for mast cell stabilization
• Skullcap for sleep
• Melatonin (10 mg) for sleep
• Compounded Low Dose Naltrexone (0.25 mg) for inflammation and mast cell stabilization
• Hydroxyzine (30-50 mg) for sleep for mast cell stabilization
• DIM (Di-Indolylmethane) for sleep and hormone metabolismDIMDIM (Di-Indolylmethane)

A year ago I had taken up cycling and I was gradually adding running, but after an injury, I realized my body couldn’t tolerate running. In the spring of 2024, I decided to take up backpacking, and as I have healed this summer I completed 129 miles of solo backpacking in the wilderness of northern Minnesota.

What has helped the most?

Here are my top three treatments that have helped me heal my MCAS the most:

1. Nervous system retraining. I use the Safe and Sound Protocol (SSP).
2. Healing my gut. For me, this meant treating SIBO, realizing I had difficulty metabolizing sulfur, supplementing with digestive enzymes and butyric acid, and adhering to a gluten-free diet. The most life-changing improvements in this area happened when I started making my probiotic-rich yogurt.
3. Being in nature. After spending over 30 nights camping outside in the wilderness alone this summer I can’t ignore that nature is healing. After my first 3-day backpacking trip, my inflammation decreased dramatically, and my worst MCAS symptom (neuropathy) disappeared. Each time I went out on a 3-4 day backpacking trip I successfully tried new foods that I had previously not tolerated. When I went home from these trips I noticed that my inflammation and symptoms took longer an longer to creep back. As the summer progressed I got physically stronger and gained endurance. I stopped experiencing the symptoms of exercise intolerance early in the summer, and I began to gradually lose the excess weight I had been carrying. I also noticed that my nervous system was better regulated when I spent prolonged time in nature. I slept better, exercised more efficiently, and felt better for longer periods after coming back home.

With winter approaching I won’t be able to backpack much longer. However, I’m making plans to continue to experience the healing influence of nature and exercise at my current level by Nordic skiing during the winter.

Check out this powerful frequency device

Healy is an individualized microcurrent device I use occasionally to reduce inflammation. Check out this post for more about Healy.

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What do you think?

I’d love to have your reply below!

Disclaimer

The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure or treatment. Always seek advice from your medical doctor.