A Journey Overcoming ME/CFS and MCAS: From Debilitating Symptoms to 90% Recovery

By Logan Cookingham (Founder of Vitalize U)

Introduction

Before diving into what worked for me, I want to emphasize that everyone's healing journey is unique. What helped me may not work for everyone, and what didn't work for me might be someone else's solution. Consider my story as just one data point in your search for answers, not a definitive roadmap. I'm sharing this because I know how isolating chronic illness can be, and how desperately we search for stories of hope and potential solutions.

The Lonely Road of Invisible Illness

Let me be real with you - this journey was profoundly lonely. When you're battling symptoms that don't show up on standard tests, people struggle to understand what you're going through. Friends drift away because you can't participate in normal activities. Family members try to help but can't fully grasp your experience. Even doctors sometimes look at you like you're making it up.

There's something uniquely isolating about knowing something is deeply wrong with your body while the world keeps telling you you're fine. You start questioning yourself. Am I overreacting? Is this all in my head? But deep down, you know. You know your body has changed, and you're not the person you used to be.

This loneliness became as much a part of my illness as the physical symptoms. If you're reading this and nodding along, know that I see you. What you're experiencing is real, even if nobody else can see it.

My Symptoms: When Your Body Becomes Unrecognizable

In 2021, my health collapsed following exposure to the spike protein. The symptoms were overwhelming and seemed to affect every system in my body:

  • Cognitive Challenges: Debilitating brain fog that made me feel detached from reality. I struggled to recall specific words, lost my ability to think strategically, and experienced alarming memory issues – not just forgetfulness, but forgetting what I was saying mid-sentence.
  • Respiratory Issues: My asthma became so severe that merely being in the presence of someone who owned a cat could trigger an attack. I was prescribed the strongest possible asthma medications before injectable biologics.
  • Gastrointestinal Problems: Severe inflammation in my lower intestinal tract, with visible bloating of 1-2 inches. I experienced violent acid reflux that nothing seemed to touch.
  • Extreme Fatigue: Bone-crushing exhaustion that sleep couldn't fix. I'd wake up feeling like I hadn't slept at all. Any emotional, mental, or physical stress would completely deplete me.
  • Neurological Symptoms: Constant tension headaches that felt like plastic bands pulling back my forehead.
  • Visual Disturbances: Blurry vision and difficulty focusing or concentrating visually for even short periods.
  • Physical Deterioration: Brittle fingernails and hair loss.
  • Sleep Disruption: Waking 3-6 times nightly, never feeling rested despite sleeping.
  • Exercise Intolerance: Perhaps most devastating for me as a former half Ironman athlete - exercise, once my stress-relief tool, now worsened all my symptoms. I went from training for triathlons to being concerned about walking too much.
  • Mental Health Impacts: For the first time in my life, I experienced deep depression and even had suicidal thoughts. This terrified me - it was so foreign to who I'd always been.
  • And Many More: The list of symptoms was constantly evolving and seemed endless - strange sensations, new sensitivities, and subtle dysfunctions that are hard to even put into words.

The ME/CFS Diagnosis: A Partial Picture

My constellation of symptoms led many doctors to suggest ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) - a diagnosis that describes the symptoms but doesn't address the root cause. ME/CFS is essentially a collection of symptoms including profound fatigue, post-exertional malaise, cognitive difficulties, and sleep problems.

While the ME/CFS label accurately described what I was experiencing, it didn't explain why it was happening. This is the challenge with many "mystery illnesses" - they describe the what, but not the why.

For me, the breakthrough came when I discovered that MCAS (Mast Cell Activation Syndrome) was the underlying driver of my ME/CFS symptoms. When my overactive mast cells released their inflammatory chemicals, they created the cascade of effects that manifested as classic ME/CFS.

This distinction matters because treating the symptoms of ME/CFS without addressing the root cause (in my case, MCAS) is like trying to dry a floor while the faucet is still running. Understanding the root cause opened up much more effective treatment options.

The Medical Maze: When Tests Say "Normal"

These symptoms were so severe that I took a three-month medical leave from work. During this time, I bounced from specialist to specialist - neurologists, psychiatrists, general practitioners, even specialized clinics. I explored both conventional and alternative approaches, desperate for answers.

The universal response? "Your tests look normal." Nothing was detectably wrong, yet I was clearly not the same person. This disconnect between objective testing and subjective experience is perhaps the most isolating aspect of conditions like MCAS. I knew something was profoundly wrong, but felt unheard and invalidated by the medical system.

One psychiatrist barely let me speak, interrupted constantly, and concluded I just needed antidepressants. He had no curiosity about what might actually be happening to my body. That experience taught me an important lesson: not all medical professionals are equipped to help with complex, emerging conditions.

Finding the Right Medical Support

One crucial aspect of healing from complex conditions like MCAS is building the right medical team. Here's what I learned:

  • Look for curiosity: The best doctors for complex conditions are those who admit when they don't know something but are curious to learn. These physicians become partners in your healing rather than gatekeepers.
  • Prepare for appointments: I revolutionized my doctor visits by bringing a prepared presentation. This included:
    • A PowerPoint with my current supplement regimen
    • A clear timeline of my health journey
    • Lists of therapies I'd tried, what worked, and what didn't
    • My current symptoms with severity ratings
    • A dedicated Q&A section with specific questions I needed answered
    This level of preparation completely changed the dynamic - doctors took me more seriously, and we used the limited appointment time much more effectively.
  • Leverage AI for research: One unconventional but incredibly helpful tool in my journey was AI. I would provide ChatGPT with detailed information about my symptoms, medical history, test results, and treatments I'd tried. Then I'd ask it to help me identify patterns, suggest potential avenues to explore, or explain complex medical concepts. This wasn't about replacing medical advice but rather helping me become a more informed patient. I'd bring these insights to my appointments as discussion points, which often led to productive conversations with my doctors. AI helped me organize my thoughts and connect dots I might have missed otherwise.
  • Trust your instincts: If a doctor dismisses your experiences or makes you feel "crazy," that's a reflection on them, not you. It's okay to find someone else. Some of my best treatment insights came after leaving physicians who weren't the right fit.
  • Consider functional medicine practitioners: These doctors are often more familiar with conditions like MCAS and typically spend more time understanding your complete health picture. They're generally more open to integrative approaches that combine conventional and alternative therapies.
  • Build a team: My healing accelerated when I stopped looking for one doctor to solve everything and instead built a team with diverse perspectives. Some were more conventional while others specialized in emerging conditions and integrative approaches. Having these different viewpoints examining my case was invaluable - each contributed different pieces to my healing puzzle.

Returning to Work: Pushing Through at a Cost

Three months after the initial onset of my symptoms, taking a full three months off work, and meeting with numerous doctors, I still had no answers about what was happening with my health. Nevertheless, I had to return to work still in biological chaos.

The first three months back were rough – I missed goals but eventually caught up in the fourth month. But man, did it come at a cost.

Every ounce of energy went to work. My social life? Gone. Weekends were spent in recovery mode - literally just laying around trying to recharge enough to make it through another week. Meanwhile, my health kept declining as stress mounted.

Looking back, I probably could've healed way faster if I'd prioritized my health over my career during this time. That's a hard lesson when you're ambitious and career-focused, but sometimes stepping back is actually the fastest way forward.

Finding Answers: Becoming My Own Health Advocate

As more research emerged about spike protein-related issues, I cautiously began trying new treatments. I discovered several crucial truths:

I realized that I was my own best doctor. Nobody - no matter how many degrees they had - understood my body and symptoms like I did. Some conventional wisdom turned out to be dead wrong for my situation. Case in point: an allergist told me a treatment wouldn't help at all, only for it to completely resolve my asthma six months later when I finally tried it.

The quality of physicians varied dramatically. Some were dismissive and close-minded, while others were genuinely curious and helpful. What worked was taking pieces from different healing modalities and creating my own unique protocol.

Understanding MCAS: The Key to My Recovery

The breakthrough came when I realized that Mast Cell Activation Syndrome (MCAS) was driving my symptoms. For those unfamiliar:

MCAS is a condition where mast cells, an important part of your immune system, become hyperreactive. Think of mast cells as your body's alarm system - they're found throughout your tissues and release various chemical mediators when they detect a threat. In MCAS, these cells inappropriately release these chemicals in response to triggers that shouldn't cause such reactions.

These chemicals include histamine, prostaglandins, leukotrienes, and cytokines, which can affect virtually every system in your body - explaining why MCAS can cause such wildly diverse symptoms.

Common triggers include:

  • Certain foods (especially high-histamine foods)
  • Environmental allergens
  • Chemicals and fragrances
  • Physical stress (explaining my exercise intolerance)
  • Emotional stress
  • Temperature extremes
  • Medications

This explained why my symptoms were so varied yet interconnected, and why conventional testing missed it – MCAS is primarily a functional disorder that doesn't always show structural abnormalities.

The Mental Component: Mind as Medicine

I'll be honest - when I first heard about the mind-body connection, I completely rejected it. No way in hell was my mind responsible for what was happening to me! It felt dismissive of my very real physical symptoms.

But eventually, I reached a point where the pain of staying the same was greater than the pain of trying something new. I began deeply auditing my thought patterns, emotions, and beliefs.

What I discovered was profound: chronic illness brings our worst characteristics to the surface. Our deepest limiting beliefs that have been running in the background our whole lives suddenly take center stage. For me, these included constantly telling myself "I'm not good enough" or calling myself an "idiot" when I made mistakes.

I realized these thoughts weren't just unpleasant - they were actively contributing to my sickness. Each negative thought triggered stress responses, signaling my body to enter emotional states that biologically made healing more difficult.

Here's what I discovered: our thoughts literally create our biochemistry. A single negative thought triggers a cascade of stress hormones that can increase inflammation, divert blood away from healing processes, and activate fight-or-flight mode. When this happens chronically, your body never gets the chance to properly heal.

The vast majority of Americans face significant chronic stress, which is a major driver of health challenges. While stress might not be the root cause, it can certainly prevent your body from healing.

My approach included journaling to identify limiting beliefs, visualizing my healthier self, meditation (Dr. Joe Dispenza's work was life-changing here), Wim Hof breathwork, cold exposure therapy, grounding practices, and simply getting outside more. This wasn't about "thinking positive" – it was about rewiring neural pathways and shifting my nervous system from chronic fight-or-flight to rest-and-digest mode.

Supplements and Natural Remedies

While mindset was foundational, specific supplements dramatically accelerated my healing:

Core Supplements That Helped Me

  1. Turmeric Curcumin (4+ years and continuing)
    • Nature's most powerful natural anti-inflammatory
    • Reduced gut inflammation, asthma, allergies, and body aches
    • Improved mental clarity (crosses blood-brain barrier)
    • Well-studied with substantial scientific backing
    • Finding a high-quality, bioavailable formulation was crucial - which eventually inspired me to create my own to ensure the potency and purity I knew was necessary for healing [Vitalize U]
  2. Black Seed Oil
    • Powerful multi-action compound with anti-bacterial, anti-fungal, anti-inflammatory, and anti-viral properties
    • Rich in antioxidants that help fight oxidative stress
    • Supports immune balance
    • Traditionally used for respiratory health
  3. Luteolin
    • Powerful mast cell inhibitor that prevents degranulation
    • Game-changer for my MCAS
    • Completely eliminated my need for asthma medications
    • Note: effectiveness varies significantly between individuals
  4. Specific Probiotics (especially ProFlora 4R)
    • Transformed my gut health
    • Addressed severe acid reflux resistant to medications
    • Supported overall immune balance

Additional Helpful Supplements

  • Bromelain (from pineapple stems) - helps control mast cell activation
  • Quercetin - natural mast cell stabilizer
  • Digestive Enzymes - improved nutrient absorption
  • DAO Enzymes - helped with histamine intolerance before meals
  • Liposomal Vitamin C - supports mast cell stability
  • Rutin - reduces histamine release
  • NAC - supports glutathione production and detoxification

Prescription Options

While these didn't work for me personally, many MCAS patients benefit from:

  • Cromolyn sodium
  • Low-dose naltrexone (LDN)
  • Ketotifen
  • Over-the-counter antihistamines (H1 blockers like Zyrtec, H2 blockers like Pepcid)

Dietary Approaches

Diet played a crucial role in my recovery:

Ketogenic Diet

The ketogenic diet helped me in multiple ways:

  • Reduced dietary inflammation
  • Switched my fuel source from glucose to ketones (which the brain often prefers)
  • Improved mental clarity and cognitive function
  • Minimized blood sugar fluctuations that can trigger mast cells

I eventually modified my approach to exclude dairy, which further reduced inflammation for me.

Fasting

Extended fasting revealed that food was a significant trigger for me. Three-day fasts helped reset my system and gave my digestive tract time to heal. Intermittent fasting also proved beneficial for maintaining improvements.

Trigger Avoidance

Identifying and avoiding food triggers was essential during the healing phase. Common MCAS food triggers include:

  • Fermented foods
  • Aged foods (certain cheeses, cured meats)
  • Alcohol
  • Artificial preservatives and additives
  • High-histamine foods (avocados, spinach, tomatoes for some people)
  • Individual trigger foods (which vary greatly by person)

Where I Am Today

After years of dedicated work, I've reclaimed most of my health and functionality. While I still implement many of these practices and continue to heal, I've regained the capacity to live, work, and enjoy life in ways I once thought impossible. The journey has transformed not just my health but my entire perspective on healing, wellness, and the mind-body connection.

Final Thoughts

If you're struggling with MCAS or similar chronic conditions, please remember:

  • Your experience is valid, even when tests say otherwise
  • Healing is possible, even from severe cases
  • The path will likely be uniquely yours
  • Both conventional and alternative approaches may have pieces of your solution
  • Your mind is a powerful healing tool
  • Patience and persistence are essential

This journey has led me to create Vitalize U, where I'm dedicated to helping others find their path back to health. While everyone's journey is different, no one should have to walk it alone. If you're struggling and need someone who understands, feel free to reach out directly at [logan@vitalizeu.com]. I can't promise I'll have all the answers, but sometimes just connecting with someone who's been there makes all the difference.

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