I'm back from the dead, with tales from the underworld and an admission. The TL;DR version of this story is: I was extremely sick for a few months. And by sick, I mean my body was seemingly shutting down and preparing for death. The last three and a half months have been, without a doubt, the most physically and emotionally trying days of my life. It's kind of a miracle that I'm even alive and somewhat functioning right now.
Now for the longer story.
It all started with my legs giving out. They'd get numb, tingly, then I'd lose all strength and either have to stop walking, sit down or fall over. At first I thought it was from working out 1.5 hours six days a week, but then it got bad enough to stop working out altogether. Then came the blurred vision, headaches, muscle weakness and fatigue. I'd sleep 10+ hours a day and still fall asleep in the bathroom stalls at work. At the time, I felt certain I was headed for a multiple sclerosis diagnosis.
My primary doc had every test imaginable taken and all that came back was that I had early thyroid disease. So I went to an endocrinologist at Cedars Sinai. Contrary to what my doctor said, she claimed that not only did I not have early thyroid disease, but I was perfectly healthy, despite my list of symptoms. My sky high reverse T3 levels that are usually indicative of a body in crisis, "means nothing, we don't look at that number," she said. When I asked for a recommendation for who else to see, she said I didn't need to see anyone because, according to my lab work, I was perfectly healthy. (Respectfully, fuck you, Dr. Liu.)
Then the cardiac problems came. Heart palpitations that would take my breath away, constant pressure in my chest, tingling in my left arm, nearly passing out every time I stood up. During this time, I couldn't stay hydrated no matter what I did. I was drinking 1.5 gallons of water a day and was thirsty all the time. Even with electrolyte additives and pouring sea salt on everything, I was still always dehydrated. I wore a holter monitor to record my heart for three days and all that came back was that I had "a heart arrhythmia" and "low blood pressure." The doctor offered me beta blockers, a medication that only dehydrated me further, to the point of headaches and mild hallucinations.
Then I stopped sleeping completely, and the anxiety, depression and bouts of psychosis came. This is the hardest to talk about, because it's embarrassing to admit. I was having breaks with reality. It felt like I was living in an acid trip and I never knew what was real or what was in my head. I couldn't sleep no matter how many benedryl, valium, melatonin, valerian, etc. I took, and still never went to sleep. For months, every night I took too much of some combination of sedatives. Each night I would fill my cat's food and water bowl(s) all the way up, believing this could be the night that my body would finally give out and die.
Around this time I had to stop working. After a couple weeks of sleeping only 2-3 hours once a week, my nervous system was completely fried. I was constantly shaking/vibrating and could barely form sentences. I started making more mistakes at work and wasn't able to keep up the illusion that I was fine anymore. My body and brain had deteriorated to such a degree that I started strongly considering the idea that, at 29, I might have to live in a nursing home. After about two months of not being able to take care of myself, my apartment had turned into a hoarder's garbage wonderland, so my dad flew out to help for a week, followed by my mom for two weeks.
Next, I paid an exorbitant fee to see a specialist who didn't take insurance. He ran a lot more tests and told me I had adrenal dysfunction, which was responsible for the thyroid, anxiety, delusions, cardiac problems, lack of sleep, dehydration, basically everything. He started me on adrenal medication and I started seeing minor improvements with my heart and the delusions. But when I asked him what could be responsible for this cascade of health problems all of a sudden, he said, "It's hard to say. We may never know." Something about this felt wrong, so I never went back, despite him being the only person who had any answers whatsoever up to this point.
Then came the rashes, hives, stomach pain, and bizarre allergic reactions to pretty much everything around me. At this point, I still wasn't sleeping, still had severe weakness, but hey, at least the anxiety and delusions were gone. Part of me knew that had to be something bigger behind this, so I went to a functional medicine doctor (aka the only type of doctor I will ever go to again).
She ran several blood tests, including one for the Epstein Barr virus. I had mono when I was 7, so I've had that virus for most of my life, but so do 90% of the general public. Most people never have problems with it or even know it's there, except for me and a few thousand other people on internet message boards. According to the test results, my EBV antibodies were 28 times higher than the clinical range for "high," which means the virus reactivated and had rapidly spread, seemingly attacking my organs one by one (heart, brain, endocrine system, nervous system, immune system, etc.). She also gave me something for sleep. So thank god, after only sleeping a few hours once a week for two and a half months, I've now been able to sleep every night for the last 18 days. It's been completely transformative.
This isn't the end of testing though. We're doing more to find out what caused the EBV to reactivate and spread so quickly, so that hopefully we can fix the root of whatever started this whole thing and make sure it never happens again. Two weeks ago, I also starting doing an intense protocol to kill the EBV. I take 109 pills a day and 2 liquid medications, on a schedule that's broken down into eight increments throughout the day (5:30am, 6:30am, 10am, 12pm, 1:30pm, 3pm, 5:30pm, 9pm). It seems like a ridiculous amount, but most of it is pharmaceutical grade supplements/vitamins and a handful of prescriptions. It won't be this way forever, but I did choose to take the aggressive route with it.
And... it's working. Initially, it was tough while my body was trying to do battle with the virus, but as this protocol kills more and more of it, I'm starting to feel the light come back in my eyes, some hope for the future, like maybe I will be normal again. The fact that I was even able to write any of this is a sign of massive improvement to me.
As dumb as it sounds, I strongly believe this happened for a reason. The feeling of being a prisoner in a failing body, feeling so close to death I could taste it, it really made me reevaluate what's important to me and what I want out of life. My relationship with my parents, friends, strangers and even myself has transformed into something so much better than anything I thought I could have.
It's also given me a lot more compassion for others. When I see a homeless person talking to themselves on the street, I can't help but think I was only two great parents and one immensely understanding boss away from being there myself. I truly believe we're all just 2-3 back-to-back tragic life events away from completely losing everything. You could be rock solid on top of the world and have a random string of events knock you down into the gutter through no fault of your own. Compassion and community are really the most important things we have.
The only anger I have throughout this entire thing is how incredibly primitive the medical community's understanding of this common virus is. So often, it feels like we live in the future with our iPhones, Postmates, Instacart and Lyft, but why is it that most doctors don't know anything about a virus that exists in 90% of people? There's nothing more upsetting than feeling your body rapidly deteriorate and every doctor you see just shrugs and says, "I guess this is just your life now." I have no doubt that if I would've stuck with my original doctors, I'd either be dead or near death right now. Having support from so many great people is the only thing that gave me the strength to keep reaching for better answers and better doctors, even when I didn't feel like I had any energy left.
If you or someone you know is experiencing anything similar to what I've described, feel free to drop me a line. I'd hate for anyone to suffer like I did. I can't give medical advice, but I can tell you what resources I used and maybe point you in the right direction.