Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Friday, December 16, 2011

From Onset to Diagnosis – 6 Months

First Month – Confused But Not Worried

If I would have known that June 4, 2011 was the last day I would feel well, possibly ever, I would have spent it doing something other than installing an attic ladder. But, sadly, that's the last thing I did as a fully healthy person. I got sick that night with what felt like the worst flu I'd ever had. I call it "the worst" because it came with seemingly every symptom associated with flu, all at once. Fever, nausea, headache, sore throat, swollen glands…basically all 15 of the symptoms listed on my "Symptoms" post.

When I didn't improve after a week, I visited my family doctor (GP), who prescribed antibiotics (Cipro). In the meantime, my standard CBC blood panel came back negative. What a relief, I thought, I'll be back at work in a few days. But the Cipro didn't help. I returned to work anyway, and my coworkers remarked how pale and sickly I appeared.  I felt dizzy every time I stood up.

After another course of antibiotics failed to cure me, my doctor referred me to an infectious disease specialist, Dr. S.A. Doctor S.A. ran her own set of blood tests, checking for a handful of scary viruses, including HIV! Again, nothing. On my return visit, she said I probably had "an unidentified virus." "There are hundreds of viruses that can make you feel this way, and we can't test for them all," she said. "But, usually it clears up in about a month. Six weeks, max."

Second Month – False Relief

More or less as Dr. S.A. predicted, I started to feel better after 5 weeks. It was just a really nasty bug, I thought, but it's behind me now. Only, it didn't go away completely. I improved to about 95%, but still my body was telling me, "don't go back to your workouts yet." I was functional again, but I could sense that there was something still lurking. I figured that my body simply needed a little extra time killing off the last hold-out colonies of that nasty virus.

Then, after three weeks of life at 95%, it all came back. I woke up one morning and, all my symptoms were back. It was like someone had reset the clock to June 5th again.

I returned to Dr. S.A., who promptly dismissed her former "virus theory." "A virus doesn't behave this way," she explained. "Once your body kills the virus, it's gone. It doesn't come back."

"What is it then?" I asked.

"I don't know," she said. "Let's run some more blood tests."

The blood tests, of course, all came back with what Dr. S.A. said were 'normal' results.

Third Month – Panic

The third month began with a couple of trips to a new specialist, a urologist. One of my symptoms was (and still is) this strange discomfort in the area of my kidneys. It's not pain exactly, but an internal swelling. The urologist ordered a CT scan of my abdomen, but everything appeared normal. "Check back with your GP," he said.  In the meantime, I also visted an Immunologist, who tested for Lyme Disease and prophyrria.  Negative.

My GP literally threw her hands in the air. She didn't know what to do with me. Her only other idea was to run another CBC panel, "just to see if the last one missed anything."

Around this time, I decided that 'my doctors are clueless,' and 'I need to take matters into my own hands.' So I began Googling my symptoms. This is one of the worst things you can do. Little did I know at the time, but Google has a tendency to list "Cancer" at or near the top of just about any search result involving medical symptoms. This misunderstanding is not Goolge's fault, really. It's a by-product of Google's algorithm. We've all come to trust Google implicitly, because it's usually so accurate at predicting the correct answers to our questions. But we forget that Google isn't in the business of giving us the "right" answer. It's in the business of serving up the links we are most likely to click. When people search complex sets of symptoms, they want to rule out cancer first. So, over time, "cancer" links rise to the top of medical search results.

So, I became, if not convinced, then at least suspicious, that I had "the big C," specifically, lymphoma. Other factors contributed to this misunderstanding. For one, the only other condition that consistently showed up on my Google searches of my symptoms was ME/CFS/CFIDS.  But every time I asked one of my doctors about it, they'd brush it aside with a dismissive gesture.

Another factor was that my GP didn't flinch when I asked for a referral to an oncologist. On some level, I was hoping she'd laugh in my face when I asked for it. "Cancer," she'd say, laughing. "Get out of here. You're letting your imagination get the better of you." Instead, she deadpanned, "well, I hope it's not that," and handed me a referral.

At times, I became so convinced that I had cancer, I moved beyond the question of "if" and began planning as if I'd already been diagnosed. I found myself researching treatment options. I considered videotaping a few words of advice to my infant daughter, in the event that I died. I'm embarrassed to admit this now. It seems a little hysterical. But there was a certain logic behind it. I mean, the oncologist didn't exactly balk when I explained my symptoms.  He had to wait for his own set of blood tests before ruling in out.  And even then, he said, "you can never 'rule out' cancer."

But alas, after two more trips to the oncologist, more blood work, and another CT scan, I was finally convinced that I didn't have cancer.

Now, whenever I start feeling depressed about ME, I think back to when I thought I had cancer.

(To be continued…)


1 comment:

  1. Re: your kidney pain, if this is still an issue I recommend looking into Castor Oil Packs.

    Castor Oil Packs are just castor oil placed on a cloth (usually wool), which is then placed over the area of issue.

    Castor Oil Packs are usually placed over the liver with a heating pad on top. But I also use them on my shoulder when it's aching, without the heating pad (sports as a kid, very right hand dominant). They work wonders for pain and induce a very calm feeling.