After healing from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, I am grateful for the opportunity to apply my experience to empower others on their road to vibrant health.
In Spring 2016, I fell ill with a flu-like “mystery illness” that I didn’t seem to recover from. My energy levels plummeted, my cognition declined, my digestion fell apart, and most troublingly— minor exertion often caused an immobilizing cellular-level “crash” the next day that took many days to recover from. My early doctors had no answers, and the Internet was a Wild West of promises that came with a price tag, despair, and conflicting information. I was scared of what was happening to my body and felt very lost.
I eventually realized that no one was coming to save me. After 3 years, I was able to find my way out with some help along the way.
I want to make things easier for the next person. My purpose for creating Heal with Liz is to empower people with actionable insights from myself and others who have recovered from ME/CFS.
I also had another thought: Perhaps people who recovered their health from the depths of chronic illness could inspire regular folks to make small, healthy changes to live life at their fullest potential.
In my past career, I worked as a content marketer, user research participant recruiter for top Internet properties, and founded a social recruiting startup. As a kid, I loved making homemade videos on our camcorder, writing and telling stories, reading, exploring, and enjoying the peace of nature and the pool. My 33-year-old self is rediscovering the magic of the little things in life and dreaming big.
I live with my husband Pieter in the Bay Area. I am an aunt to Millie, Benji, Rosie, Samuel, Jana, Ellie, Mira, Jasmijn, Jakob, and Skye. I love laughing, dancing in the mirror, reading helpful and funny books, and spending quality time with family and friends over delicious meals.
In my twenties, I was the life of the party, the go-getter at work who said yes to the impossible, and the lady who enjoyed everything life had to offer.
In May 2016, shortly after my 30th birthday, everything changed after “pushing through” a viral illness.
Six weeks after I collapsed in an airport with chest palpitations and flu-like symptoms, and a series of ups and downs, my body slammed on the brakes what seemed like for good. For 3 years, my body was “stuck” in a recurring nightmare, with a few scattered reprieves.
Physical effort, which was key to build up my strength to recover from major surgery years earlier, suddenly caused me to crash on a cellular level if I went too far. I had no idea why. I also would experience brain fog, chest pressure, and a flare-up flu-like symptoms.
These incapacitating post-exertional “crashes” would take between 10 and 40 days to recover from, only to return to a lowered baseline which hovered around 20-30% of my former capacity.
The Crash can be described as “Day-1-of the flu times 10” or “like being hit by a bus after climbing Mount Everest with the worst hangover ever.” Or more simply put, “a loss of life force.”
Crashes could be caused by doing more than 5 work emails (I previously knocked out 25-50 a day), a simple chore, or walking two blocks too far. Some days it took much more, some days it took even less. I have many humorous anecdotes about what actually caused a crash.
I never before realized how many parts have to work together to climb one stair, lift my arm, or process information until these simple tasks became very challenging.
In addition to physical exertion, sugar and other foods and drinks I previously enjoyed, mental stress, and oddly weather changes (humidity and rain) were associated with crashes. Crashes for me would typically happen 2 to 36 hour after the triggering event(s). About half came with clear symptomatic warning signs, half without.
Beyond post-exertional crashes, I experienced a series of perpetual alarming symptoms that sent me to a many doctors — looking at them from the lens of their single organ system — and four trips to the ER. I’ve chosen not to include these symptoms here.
No Answers from First Line of Care Except “Post-Viral Fatigue”
At first, I thought something was wrong with my heart. I was born with a unique heart (that’s all I care to share).
In the beginning, I got multiple tests from my primary care doctor, my saintly cardiologist, infectious disease doctor, and ear-nose-and-throat doctor.
My d-dimer result was elevated in the beginning, but there was no explanation for it.
Only my positive EBV IgM acute antibodies were of real note. However, my chronic EBV antibodies (which typically take 3 months to appear) were also positive. My primary care doctor’s colleague, an infectious disease doctor, said EBV reactivations were rare and usually asymptomatic. He concluded my symptoms were from “post-viral fatigue” from an unknown, more recent virus.
I was experiencing much more than “fatigue.”
I had the stamina of a 90 year old. I lived nextdoor to a retirement home, and the 85 year olds outpaced me when I’d drag myself to the bench on our street corner. But that wasn’t the only thing.
I was having trouble breathing (like an elephant was sitting on top of me), sleeping, and breaking down food, among many other troubling symptoms. I was prescribed an antacid and given an inhaler.
By week 10, after one of around a half dozen immobilizing crashes by then, I felt terrified and desperate. I had never taken longer than 3 weeks to recover from a virus. My body felt worse than I could have ever imagined was humanly possible.
I wanted my life back. I was told to just wait, and I’d probably be better.
Got various systems checked out by specialists
I nevertheless was referred to multiple specialists who looked at me organ system by organ system, and despite multiple borderline results, nothing jumped out.
A spelunking mission to investigate my intestines (a routine screening procedure) triggered a bad crash, a major viral relapse, and severe GI symptoms, unlocking what I can only describe as “the next layer of hell.” I had assumed the gastroenterologist would find my intestines were broken or a hungry worm who was eating all my food (hence why I had no energy), but nothing was found.
After these fruitless endeavors, I suspected I might have to take a different course of action to save myself from this nightmare.
I just didn’t realize it would take me another two and a half years.
Barely able to look at a screen for more than 30 minutes a day, I tried to find answers online.
Doctors had told me to “just eat a balanced diet,” and I’d soon be fine.
Maybe this strategy was right for people with great health, but it was not working for me. For some reason, my body was rejecting entire quadrants of the food pyramid. Though I ate much healthier than most people before, I revamped my diet based on listening to my body and extensive research.
Willing to do anything to get better, I also went through garbage bags full of supplements (many left untouched when I’d later Google side effects). Doctors told me not to bother with supplements “because they just give you expensive urine” and reminded me that supplements are unregulated.
I could see doctors wanting to protect me from a fad diet or supplement hoax. There were indeed so many promises that this one herb or one vegetable or one bone broth powder or one vitamin would fix me!
With research, trial and error, and the help of a good naturopath, I found the right nutrients for me that had a positive effect on my health.
Changing my diet and finding the right supplements to safely support my body’s functionality helped me climb out of a layer of hell. My physical and mental stamina improved from a baseline of 15% to 30%, and my digestion improved from a 1 to an 8 out of 10 thanks to my diet, microbiome, gut, and nutrient support.
Despite having mostly recovered my gut and now able to go on short walks, I was still a shell of my former self. What was worse, I didn’t know what I had or what to say to others.
On social media, I simply explained “I can only Dad dance right now and hope to dance with my full shimmy moves again.” The world was missing out on my mirror dance videos I’d post on the Internet (I’m laughing as I type this)! For the most part, I simply disappeared from my social life and from social media.
I was also no longer my sharp self. Not only was my mental capacity significantly hampered on a daily basis, when I’d “crash,” I’d often have difficulty speaking and recollecting common words.
I had no clear answers for my coworkers, my loved ones, or myself as to why I was suddenly failing at life.
My $60,000 in personal savings quickly disappeared trying to get my life back. I was now no longer an “independent woman” and completely dependent on my now husband for financial support and help with 90% of the laundry. I could fold our socks.
Instead of throwing in the towel, I tried to cling on. I tried to hold on at work going part-time for far too long. The new company I joined just 3 months before getting sick was amazingly kind. I felt bad, considering I had burnt myself out at my previous company, which I felt likely contributed to my health state.
I saw a referred psychiatrist, who didn’t take insurance, to check off the mental health box. She helped end a recurring dream, taught me cool biofeedback techniques, and gave me good suggestions for setting boundaries with others.
Her no refunds within 24 hours policy was more of a challenge, as my physical capacity fluctuated widely day to day. I had a major crash after walking up the hill to retrieve my car to drive to her office on a foggy day.
I had assumed this psychiatrist would help me make peace with not having a diagnosis, but she encouraged me to develop a plan to get one.
I saw a radiologist who ruled out lymphoma, but noted my glands were inflamed. I saw a blood doctor, who years earlier diagnosed me with Beta Thalassemia anemia which runs on my mother’s side. My hemoglobin numbers didn’t show a difference, but he offered me an iron injection because my ferritin numbers were below average. I told him I had recently tried taking iron supplements, but they made my symptoms much worse. He then concluded it did not make sense for me to have the injection and wrote “post-viral fatigue” and “try graded exercise” in his visit notes.
Trying to do even just a little bit more each day, somehow made me able to do far less.
I saw an allergist, who ruled out common allergies. His genuine concern really stood out. He told me I deserved a diagnosis and referred me to a different primary care provider who took on tough cases.
In November 2016, I saw this new primary care doctor, who specialized in tough cases. He believed mono (infectious EBV, also known as glandular fever) was the cause of all my symptoms.
I also asked him why it took me only a week to recover from mono when I was 18. He told me I likely didn’t have mono when I was 18 (I only remember the diagnosis, not the tests), since most people, except the immunocompromised, get it once and it remains dormant. He believed my chronic antibodies were from a recent infection and just appeared much sooner than most (maybe I accidentally drank from someone else’s red cup on my birthday).
I asked him if I could have “ME” or “Chronic Fatigue Syndrome,” since I fit the criteria (I just hit the 6 months mark required for diagnosis from “post-viral” to “chronic” fatigue). He believed CFS was a disease of exclusion and that ME was more of a label for severe cases of CFS patients who were wheelchair or bed-bound. He told me I appeared in much better shape than his ME patients.
He came across as a smart investigator trying to get to the root of the problem. And he found an answer for my “chronic fatigue” — mono!
He said it just takes some people longer than others to recover from mono. In fact, one of his patients had taken two years. (However, it wasn’t clear if this patient had fully recovered yet. The doctor just said in his final appointment the patient could easily walk around the block.) My EBV acute antibodies had gone away by then, so it was only a matter of time!
I was extremely grateful for this doctor, because no doctor prior had ever given me a real answer.
The six months of hell I’d been through finally was explained (or so I thought): a bad case of infectious mononucleosis.
Despite crashing hard from the two-hour drive home in rush-hour traffic leaving me barely able to shuffle around my house for over a week, I was relieved that it was “just the nature” of this bad case of mono that would “eventually go away.”
Sidenote: Around this time, I was put on the “Chronic Fatigue Clinic” waitlist at a major local hospital. However, when I got off the waitlist nearly a full year later, I believed my “chronic fatigue” case was solved (“it’s just EBV”). I had also read on a forum (not sure whether this is true) that this clinic mainly just prescribes antivirals and specific supplements which I already had. I canceled this and other miscellaneous medical referrals, which didn’t seem like they’d lead to any new discovery based on my many previous experiences.
After my EBV Early Antigen D test came back positive in April 2017 (showing renewed proliferation), after my second worst-ever crash, my new primary care doctor put me on antivirals. I was grateful to finally have them.
But after 6 months, nothing majorly improved. I continued to crash and be stuck in a “Day-1-of-the-flu” state that waxed and waned throughout the weeks, and often within the span of a single day.
I suspected the antivirals would have been more effective when I had acute EBV antibodies the first time (or week 6 when I first majorly “relapsed”). Antivirals prevent replication rather than kill the virus in existing cells.
I continued to take the antivirals hoping they’d just take longer to kick in. 11 months into it, the flu-fog finally began to lift.
Eleven months into my antivirals and 3 months after finally fully quitting my job (I was doing part-time), my health started to majorly improve.
Looking back, I wonder if eliminating stress did more for my immune system than the 900 antiviral pills I took, since that’s when the improvement started to happen.
My body felt lighter. I could walk 0.7 miles rather than my former 0.3 on a “good” day without a break. I went off the antivirals and felt an added boost. From February 2018 to June 2018, I had no crashes. (Previously, the longest I had gone without a crash and/or flu-like flare-up was 3 weeks).
I had eliminated sources of stress, ate a perfect modified Paleo diet, and didn’t overexert. I meditated! I saw an amazing mindset coach. I got reiki and acupuncture. I still had all my supplements and digestive enzymes, but wasn’t needing as much now. I was still sleeping with a HEPA filter to breathe through my nose at night.
I thought I was “better,” and started the idea for this blog!
In reality, I was living in a bubble…
That would eventually pop.
For user research purposes, I interviewed a dozen people with ME/CFS of various severity levels, some of whom lived just streets away and others who lived across the ocean. I was deeply affected by their stories which were strikingly similar and in multiple cases far worse than my own. Hearing their stories and telling my own, at the time, contributed to my stress levels. I felt a strong sense of responsibility and urgency for doing something to prevent others from a similar fate.
Then, one weekend in July I stayed out past 10:00 pm at our friends’ house, had a writing class deadline, and restaurant tikka masala. I was knocked down hard and my cardiac and flu-like viral symptoms came back.
I knew I needed more answers: Why was was happening?
Why is my body so sensitive to stress when I used to be a total beast? Why do other 95% of Americans have the same virus in their body and are OK?
I fit all the symptomatic criteria for ME/CFS, but never saw a specialist to confirm this nor had complete biomarker testing. Before I thought “I don’t need a diagnosis to validate my situation” and “what can they do anyway?”
After all, I was a super healthy diet, taking the “best” supplements (which I learned were the ones ME/CFS experts also recommended), got tested for many pathogenic drivers, and already tried the antivirals.
I gave it ONE more chance. I found an out-of-pocket specialist across the country, who happened to live twenty minutes from my parents after seeing an article by a CNN journalist who said he’s 95% recovered from ME/CFS.
I had no expectations besides a potential diagnosis, which might take the burden of inadequacy I felt about not being able to fully participate in life.
When I saw the ME/CFS specialist, they took a ton of my blood. They then followed up with urine tests when some results were abnormal.
I finally got the right tests showing I had multiple biomarker clues for ME/CFS.
And, which I wasn’t expecting, a pathogen that was perpetuating it! It’s wasn’t “just mono.” This doctor found something that no other doctors found.
Something my early doctors told me it couldn’t have been was perpetuating my symptoms at over 100 times the safe bodily limit. A mycotoxin from mold found in water-damaged dwellings.
I even told the ME/CFS specialist I didn’t need this test because my previous doctors said it was definitely NOT this. They told me that I didn’t have the “typical” presentation. Even funnier, my Mom had suggested it could be this multiple times. “It’s mold from your dusty old house.” It was. The type of mold that produced the mycotoxins found in my urine apparently thrives on house dust.
I learned that I had an extreme inflammatory reaction to mold, rather than a more familiar allergic reaction.
A few other things came back elevated for me, as well.
Getting complete tests was key. These tests helped save my life. I will share these tests with you in future posts.
Addressing the environmental factors blocking me from healing helped me improve from 30% to 50% energy baseline, a life-changing improvement.
I found a great local ME/CFS specialist who provided continued detox support.
I got all the crap out of my body! I was stronger! But it did not cure me.
A confluence of minor environmental exposures and stress caused me to crash and my acute EBV IgM to come back again. This would be the third time my EBV reactivated on medical record. (I suspected it was the 6th time based on the symptoms, but I didn’t get frequent tests.)
The accompanying “crash” didn’t last as long as previous ones, and I returned to my higher baseline.
I wanted to live more than a 50% life walking on eggshells. I felt that some element was missing.
I knew the why behind my crashes, but I didn’t know how to get back to my 100% self. Then I found my way out.
On Christmas Eve 2018, my wonderful grandpa passed away. I did not fly home across the country to my parents for Christmas like I had done every year of my adult life. I was too weak, and I vowed to focus on my health. I went to Palm Desert, a much shorter and calmer trip, and packed the presents my family had shipped to open via FaceTime.
I knew my Grandpa was looking over me when the day after Christmas, I clicked on a link that would forever change my life. It was to a health conference related to mold, and I clicked on one of the speaker bios that stood out.
It lead me to a neuroplasticity program (email me if you’re interested in learning about it) she developed for people with limbic system disorders which apparently included Multiple Chemical Sensitivities, ME/CFS, PTSD, and Fibromyalgia, among others. The limbic system is the part of our brain that regulates our autonomic nervous system function and endocrine function in response to stimuli. The program explains how an inflammatory response to long-term pathogenic or chemical exposure can cause dysfunction in the brain’s limbic system, similar to a traumatic brain injury, which can drive chronic illness.
Her story, though she had a different condition, spoke to me. I found success stories on the site that were various versions of me and everything I had been through. The people were young and old, had various triggers (mold, Lyme, other pathogens, major chemical exposures, head injuries, emotional trauma, and more), and had various pathways and levels of dysfunction before reclaiming their health. I knew this was it. I decided to give it a chance and began it immediately.
The skeptic in my brain was more dubious. Was this one of those “just think positive” things? Early on, pushing myself through and telling myself it was going to be OK made me go from bad to worse more times than I can count (if I have to count – roughly 45). This program I quickly learned is not this by any means. Nor is it a graded exercise program, which while beneficial for some causes of fatigue, can be dangerous for people with ME/CFS.
Rather, it’s a limbic system injury recovery program to heal how the subconscious brain processes information and to induce a parasympathetic recovery response. The science behind it is clearly presented throughout the program.
Changing my subconscious response to environmental stimuli through the power of neuroplasticity helped me heal. The program helped me safely expand my capacity for exertion and for environmental stress, so as it expanded, I could go further. And I did!
The three peaceful sunny weeks I had spent focused on recovery doing the program were amazing. When I arrived back home to SFO, I walked off the plane with ease. Just three weeks before I had been recovering from a crash and had to be wheeled to the gate (and then hobble back and forth when it changed twice).
My body felt great and my health continued to improve, even though it was cold and rained for the better part of the next three months.
I DANCED AT MY WEDDING IN SUMMER 2019 – ALL NIGHT LONG. I’M BACK IN FULL “SHIMMY” STRENGTH. I CAN WALK FOR MILES EACH DAY. I CAN SWIM AGAIN. I CAN BE SOCIAL WITH HUMANS ON FRIDAY, SATURDAY, AND SUNDAY. I’VE EATEN AT RESTAURANTS WITHOUT MY SUPPLEMENT AND DIGESTIVE ENZYMES BAGGIE.
It did this through identifying my triggers, acknowledging them, calming my brain’s limbic system (responsible for assessing danger and sending stress signals throughout the body), and helping create new neural pathways through happy past memory replays and using my imagination for one hour a day for many months. The program also provided me with empowering communication tips and simple but helpful ways to reduce stress and add more joy to my life.
I had some blips, like when I went off the program before the encouraged 6 months because I was doing so amazing energy wise without crashing. Weeks leading up to the blip, despite being in amazing shape and doing more physical activity than I ever had in my life, I started to notice a heightened feeling of stress to simple things like a wedding seating chart.
At the end of the day, our brain is the most important “muscle” to tone for our continued health. It plays a major role in how fast or slow we recover.
I used this little blip as an opportunity to solidify my commitment to rewiring my brain for a state of calm and to encourage a parasympathetic recovery response. I started the limbic system retraining program again with the spirit of a tortoise and a beginner’s mindset and have experienced continued success for which I am deeply grateful.
I’d eventually learn about top researchers investigating the cell-danger response and it’s unique metabolic signatures for ME/CFS which affect the HPA axis, glucose metabolism, and the immune system.
ME/CFS occurs when the body fails to overcome a threat and gets locked in the cell-danger response, even after the threat is gone.
I learned the brain influences the metabolism, which gave me confidence in the methods I found to rewire my neural pathways after first removing environmental threats.
In addition to metabolomic research, I’m optimistic about the research into persistent pathogens and biofilms (combinations of viruses, fungi, and bacteria that can evade weakened immune systems in biofilms) linked to chronic disease. This research can hopefully lead to the development of treatments that can help our bodies safely mitigate them.
I connected with many people in my greater neighborhood and across the world with ME/CFS at all severity levels, and while our stories are all different — the similarities were startling. We laughed. We cried. We laugh-cried about “sniffing the wine” from our partners’ glasses.
All but one of us (a former mountain biker in my neighboring town) who was diagnosed early on by a Kaiser doctor in the 1990s, took years to get a diagnosis. In fact, I was “fortunate” to get one at 2.5 years. Some others, who were in worse shape than I was, had simply given up trying to get a diagnosis and/or couldn’t afford to get one. But much more important than a valid term in a record system — we need a better standard of care.
I believe we all have the right to a timely diagnosis, safe and effective treatment, and help where needed — not just for the people with abundant resources.