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even good girls can get deathly ill
I was in my mid-20s, and I was practically bedridden. My legs were swollen, my muscles hurt, my belly was a balloon, and despite what had once been a healthy appetite, I weighed only 98 pounds. My gut was a mess, my immune system was trashed, and my once exuberant energy was nonexistent.
My life had come to a complete halt. I was so sick, I had to quit my job and spend all of my time and money going from doctor to doctor and hospital to hospital, trying to figure out what was wrong with me.
I couldnt understand it. I was always such a good girl. Seriously! I never smoked or did drugs. Aside from a little drinking in college, I was a saint as far as my health was concerned. I avoided processed and fast foods. I ate lean proteins and greens. I exercised. I wore Neutrogena sunscreen to keep my skin healthy, used Off! to avoid bug-borne illnesses, and drank my daily allotment of unfiltered tap water.
My childhood had been completely normal, too. I wasnt raised downwind of a power plant. I grew up in a cute beach town in New Jersey, eating chicken and spinach most nights for dinner. My mom washed our clothes with Tide and cleaned the floors with bleach, and my dad used pesticides on the lawn like everyone else on the block, but we had no family history of chronic disease or allergies. I was lactose intolerant, but that was about it.
I thought I was doing all the right things. So why had this happened to me?
A LIFE-CHANGING DIAGNOSIS
I was a 25-year-old marketing professional in Manhattan, with a few big corporate notches on my belt. Id worked at Ralph Lauren and Vogue magazine, and was settling into my new job at the NBA when I noticed something odd: my legs were swelling up.
Im not talking about a little premenstrual water weight. Im talking 40 pounds of water in my legs. Id wake up in the morning and be fine, but as the day wore on, the water would collect to the point where I could barely bend my knees or even take my pants off.
Freaked out, I finally went to the emergency room. They took my vitals. Turns out my white blood cell count was 1.1 (normal is 4.0). As you can imagine, this diagnosis was very concerning, but because I seemed completely fine for the most part, they let me go home to wait for the rest of the test results.
I was eating lunch at my desk the next day when the doctor called and said I needed to leave work immediately. He gave me an address downtown. I showed up and found myself at a Manhattan cancer hospital. I called the doctor and told him he must have sent me to the wrong place.
No, he said, thats where youre going. You have leukemia.
Huh?
UM, WAIT, MAYBE NOT
I was shocked, to say the least. I thought I ate well and lived well, and what? I had cancer? It couldnt be.
Without so much as a how-do-you-do, the medical staff had me bend over so they could administer a bone marrow biopsy. It was one of the most painful procedures Ive ever experienced (imagine taking a corkscrew to the tailbone). The whole time, I kept telling myself, Amie, you know your body best. You know this isnt right. Just hang in there and well get through this.
Turns out it was a false scare. Upon further testing, they determined that I did not have leukemia. Something was wrong with my bone marrow, though. It was gel-like, which is normally a sign of malnutrition. Basically, my body wasnt absorbing anything I was eatinghealthy or not. Moreover, my cells couldnt hold on to fluid, which is why it was running through me and collecting in my legs.
I was relieved I didnt have leukemia. The problem was, I was still sick, and no one knew why.
WESTERN MEDICINE MAKES ME A LAB RAT
Because I was so thin, the professionals at the Mayo Clinic and the New York hospitals assumed I was anorexic, or bulimic, or both. Of course, I wasnt! I was eating what most people consider a healthy American diet, and Id always had a very hearty appetite. The nutritionist told me to drink more milk (dairy), eat more whole wheat bread (gluten), and get more conventional red meat in my diet (linked with inflammation), and that it didnt matter if it was all organic or not.
Really?
Meanwhile, my white blood cell count remained chronically low. Over the course of the next two years, I had 24 vials of blood drawn every other week, to monitor my blood levels. I felt like I was living at the hospital.
I was also sent to a host of physicians. Liver doctors. Kidney doctors. Vascular surgeons. Rheumatologists. Hematologists. I saw every GI (gastrointestinal) doc up and down the eastern seaboard. They didnt have answers; they had guesses. And all of them turned out to be wrong.
I was told I had hypothyroidism, so they put me on Synthroid, a thyroid-regulating drug. No change. In the meantime, my immune system had been severely damaged, and as a result, I had no good bacteria in my gutonly way too much bad bacteria. My belly swelled to the size of a pregnant womans. People honestly thought I was pregnant and asked when my due date was!
The doctors put me on the strongest antibiotics available to help combat the bacterial overgrowth. This further taxed my immune system, because it wiped out everything. When I asked if I should be taking probiotics to help rebalance and support my good gut flora, they said no.
These were teams of doctors at the best hospitals in the countrywho was I to question them?
I STARTED TO FIGURE IT OUTBUT MY DOCTORS LAUGHED
Feeling more sick and tired than I had ever felt, I did what any girl would do: I Googled. I started reading about my symptoms. The more I researched, the more I learned. Eventually, I was able to surmise that I hadin addition to my other maladiesdeveloped leaky gut syndrome, a condition in which the intestinal walls become so compromised they let bacteria and pieces of undigested food leak out into the rest of the body. This, in turn, causes a host of autoimmune issues, inflammation, and more. I had also developed chronic candida, a yeast overgrowth in my gut.
I received no help from my slew of doctors. Leaky gut and candida? They literally laughed at me. I might as well have told them I had fairies living in my large intestine.
Meanwhile, I developed myositis (inflammation in my leg muscles), which gave me cramps that hurt so badly I could barely walk. The rheumatologist put me on steroids. Sure, they took the pain away, but what I didnt realize at the time was that there was a price to pay: they affected my cortisol (stress hormone) levels and increased my symptoms of adrenal fatigue and candida.
THE CRAZY HYPOCHONDRIAC
Eventually, I became so sick that life as I knew it stopped. I couldnt work and had to go on disability. My social life went out the window. Even worse, my friends, coworkers, and the other people in my life who I thought supported me started to think I was crazy. Surely if a doctor couldnt pinpoint what was wrong, there must not be anything amiss, right? As far as anyone could tell, it was all in my head.
But I knew better. I wasnt faking it. By the time I checked myself into a hospital in Philadelphia, I had developed whats called C. diff colitis, a deadly condition in which a form of bacteria called C. difficile proliferates in the colon.
Its particularly dangerous when your immunity is weakened, as mine was. Without any other bacteria to compete with, C. diff essentially takes over and destroys anything in its path. The Centers for Disease Control and Prevention (CDC) notes that the condition is linked to 14,000 American deaths each year.