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I Thought I Was Dying & Nobody Believed Me — Then I Was Diagnosed With This

Author:

Michael Chernow

May 22, 2021

Restaurateur

By Michael Chernow

Restaurateur

Michael Chernow is a restaurateur and entrepreneur who graduated with degrees in Culinary Arts and Restaurant Management from the French Culinary Institute. He is the founder of the restaurant Seamore’s and co-founder of The Meatball Shop.

Invisible Illness Series - Michael Chernow

Image by Michael Chernow

May 22, 2021

While some health issues are visible to the outside world, many people face chronic conditions that don't have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen's new series, we're giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

I started noticing weird symptoms about four years ago—I was feeling tired and rundown, among other things. But the first symptom that put me in a real state of concern was a swollen lump on the back of my head.

Shortly after discovering it, I went to see my primary care doctor who decided to run some blood work. Everything came back clear, and I was told the lump was a swollen lymph node. I should have been relieved, right? But I know my body, and I knew something was off.

As time went on, the symptoms only became worse: My joints would swell up so badly that some days my hands were too big to make a fist, my toes would be stiff and painful, and the lymph node on my head was not going down.

How the physical symptoms affected my mental health.

I got to a point where these unexplained symptoms started affecting my stress levels and my anxiety. I started feeling depressed because I couldn't figure out what was wrong with me—I literally thought I was dying of cancer—and worst of all, nobody believed me.

I knew I had real symptoms, painful symptoms. I had shortness of breath, anxiety, panic attacks, weird sensations in my hands, dry skin all over my body, a weird film over my teeth, swollen joints, painful knees, and more. These flare-ups would just show up out of nowhere, and people told me it was all in my head.

About a year went by and my mother, my wife, and my sister—all of the closest people in my life—basically thought I was having a mental breakdown. And to be honest, I was, because I couldn't figure out what was wrong with me.

As an alcoholic in recovery for about 17 years, I'm no stranger to mental health battles. So when my family recommended seeing a psychiatrist, I did. Until that point, I'd always used fitness, nutrition, and community to help manage my mental health, but for whatever reason, these tools were only getting me so far. I needed more guidance.

After a year of thinking I was dying of some mystery disease or cancer, the psychiatrist prescribed me an anti-anxiety medication. I started taking it, but nothing changed.

How I finally received an accurate diagnosis.

I visited Parsley Health, a functional medical clinic, under the recommendation of an old friend. There, the doctor took an enormous amount of blood, and I came back positive for anti-nuclear antibody (ANA), which is just a vague result indicating autoimmune disease. They also found high levels of heavy metals in my bloodstream.

To eliminate the heavy metals in my body, I cut back on my five-days-a-week fish intake and started undergoing the treatment prescribed by my functional medicine doctor. I felt like I had gotten to the bottom of my symptoms, so I also stopped taking the anxiety meds.

But time passed, and the symptoms didn't fully go away.

About two years after first noticing my symptoms and not feeling any relief, I was interviewing none other than mbg founder and co-CEO Jason Wachob on my podcast, when he recommended I see functional medicine doctor Frank Lipman, M.D.

Lipman immediately assumed I had Lyme disease, but I didn't believe him. I had been tested about three or four times in the past, and each time it came back negative. He then explained, there are only one or two tests sensitive enough to detect all strains of Lyme disease, so I decided to get tested once again.

He called me days later with the results: Turns out, I was positive for Lyme disease and two strains of Bartonella (a common Lyme co-infection). I cannot tell you how excited I was to find out that I had a disease. The immediate sense of mental relief for me caused the inflammation in my lymph node to go away almost immediately.

How I continue to manage my physical and mental symptoms.

I worked with Lipman for a while, until he introduced me to Steven Bock, M.D., one of the foremost knowledgeable medical doctors on Lyme disease. I've been treated by him for a little over a year now, getting ultraviolet blood irradiation (UBI) therapy 1 and supportive oligonucleotide technique (SOT) therapy.

While those treatments have been helpful for me, I recognize that they're not accessible to everyone. And because there's no cure for this disease, you've got to take action. For me, the action is movement, nutrition, and routine.

Nutrition: I stay away from anything that could potentially cause inflammation in my body (gluten, dairy, some grains, and legumes), and I mainly stick to protein, veggies, oatmeal, rice, and sweet potatoes. I still eat fish about two times a week, but I'm much more conscious of the mercury content 2. I also eat the exact same breakfast every single day: It's a blend of gluten-free oats, plant-based protein powder, vitamin D3, omega-3 fatty acids, chia seeds, pink Himalayan salt, flaxseeds, Ceylon cinnamon, chopped almonds, pumpkin seeds, and blueberries. I make it so often, I've dubbed it Kreatures of Habit and am turning it into a business this summer (leave your email on the site so I can keep you up to date!).

Movement: I'm a hard-core athlete. I've competed in kickboxing, I've run a number of marathons, and I'm a professional bodybuilder. Movement is a massive part of my life, so the one thing that keeps me grounded during this process is powering through and getting to the gym every single day.

Routine: Additionally, I believe one of the most important things anyone can do for their mental health—disease or no disease—is to have a morning routine.

I wake up at 5 a.m. every day, and as soon as I'm awake, I smile from ear to ear for 15 seconds. It sounds ridiculous, but I feel a sense of warmth, optimism, and positivity rush over my body when I do it. Most mornings I smile so hard, I actually get myself to laugh out loud. The serotonin just starts leaching out of my brain, and I beat down any sort of untreated anxiety with optimism and positivity right out of the gate. While I'm smiling, I also picture something I'm grateful for (usually my wife and our kids sitting at the breakfast nook).

Then I sneak out of bed, do 10 minutes of silent meditation, finish four rounds of Wim Hof breathing, say a prayer, do 25 to 50 pushups, make some coffee, and write in my journal before working out. This routine keeps me grounded, even on the hard days.

What I want other people to know.

There's still a large percentage of the medical community that doesn't recognize Lyme disease as an actual thing. When I shared my story on social media, I got bashed by people telling me not to post about propaganda or false information. Thankfully, my mental fortitude is pretty intense–I'm an entrepreneur, so I'm used to dealing with a high level of pressure—but other people who deal with invisible illnesses may throw in the towel because it becomes painful, confusing, and isolating.

So here's my advice: If you know something is wrong with you, if people have negative things to say, tune them out. The worst thing you can do is stop talking about your symptoms. That puts you in an isolated state, which, from my experience, is worse than people saying you're crazy. Then, do everything you can to get the physical and mental support you need:

Look for a functional medicine doctor: If your primary doctor can't diagnose your illness, find the closest functional or integrative medicine doctor or clinic near you.
Get a therapist: Finding somebody you can feel comfortable talking to, without worrying about burdening your loved ones, is essential.

No matter what, trust that there is a solution: I am a living, walking example of it. I thought I was dying every single day and nobody could tell me differently. Then, I was diagnosed and everything changed. I still deal with physical symptoms now and then, but I no longer allow it to destroy me mentally. If you can separate what's going on with your immune system from what's going on with your mental state, the success of overcoming this thing is far greater.