You dropped a bomb on me

I recently posted here about the eye inflammation I've been experiencing in conjunction with my Behcet's Syndrome. As I mentioned, I'd been seeing a very kind, if wacky Groucho-Marx lookalike opthamologist for treatment. Well, on a followup visit in late August, he discovered the inflammation was back, and admitted to being stymied. He suggested I go see another opthamologist at the Eye Institute, a guy who's allegedly an expert in autoimmune and inflammatory eye problems.

As soon as Doctor #2 (an apt name, as you'll see) walked in the room, I recognized him as the first opthamologist I'd seen there three years ago, when my rheumatologist wanted me to get a baseline checkup. In the words of my great-grandfather, the man's an idiot--one of those pompous doctors who talks past you, to his resident, the entire time he's in the room with you.

As he'd done the first time I saw him, he immediately started spouting about how much experience he'd had with Behcet's, and how I wasn't the typical patient. He asked if I'd ever had a genetic test for HLA-B51, a genetic abnormality that some people with Behcet's have that indicates a predisposition to the disease. I had, and it was negative.

Dr. #2 sneered. "How about HLA-B27? Did they test for that?"

I wasn't sure, I replied.

"I don't think you have Behcet's at all. I think you've been misdiagnosed, and what you really have is Reiter's Syndrome. I'm going to have you get tested for HLA-B27, because that would indicate Reiter's instead."*

(Bear in mind that he's really addressing all of this to his resident, who's clearly supposed to be impressed by Dr. #2's brilliance.)

So, he has the resident fill out the order for the bloodwork, and tells him to add a couple of other tests that he tells the resident (not me) are "standard."

Here's where I made mistake #1: I should have asked exactly what those tests were. I did ask if he would call me with the results, and he said he would if they turned out to be positive; otherwise, I wouldn't hear from him.

Had the bloodwork done. Ten days or so went by and I hadn't heard anything, so I figured everything turned out fine.

Then last Tuesday I got home from work and saw that there was a voice-mail message. When I retrieved it, the first message was from someone (not Dr. #2--maybe his resident) at the Eye Institute telling me to call him immediately, and giving me his pager number, but giving me no indication about what the issue was. That call came in at 8:30 a.m.

The second message, which had come in around 4:30 p.m., was from my primary-care physician, who left an even more mysterious and alarming message, saying, "I'm sure you're concerned about this and have lots of questions, so please feel free to call me at home this evening."

Now I'm worried. I called her home number and got the machine, so I left a message saying I don't know what she's referring to because nobody's told me why they're trying to contact me, and that I'm freaking out a little.

Around 8:30, she called me back, and as I sat there on the couch next to Tom, she lobbed a bomb right into the center of my life: apparently, one of the tests Dr. #2 had ordered came back showing that I'd tested positive for syphilis.

"They want you to be admitted to the hospital right away, and you'll probably have to be there for two weeks, because the treatment is an IV antibiotic drip that needs to be administered every four hours. I also think you should know that the county health department is probably going to come around to ask you a lot of very personal questions."

My head is reeling. Is this some kind of sick joke? I was looking to the left in case a car came around the corner, and meanwhile a semi-truck blasted in from the right and flattened me.

"What? What? Are you kidding?" I don't think I've ever been less articulate in my life. "Two weeks? How?"

She says she can call and have them get a bed ready for me right now, and talks me through the lumbar puncture procedure that she says they'll probably do first. It's like she's talking to me from the other end of a long, echo-y tunnel. The impression I get is that if I don't voluntarily go to the hospital, the county health officials will come and drag me there.

Here's where I did one of the only sensible things I did: I told her that I needed some time to make arrangements, and would check into the hospital the following morning.

Then I have to get off the phone and turn to my husband of thirteen years and tell him I've tested positive for syphilis. And that by the way, I'll be in the hospital for the next two weeks. And of course, he'll have to be treated, too.

Let me just say that Tom was, as always, a rock, and thank god, because other relationships might have been (and have been) destroyed by this news.

But I didn't get any sleep that night.

Sensible things #2 and #3: I called my sister, who talked me off the ledge, told me about a friend of hers who'd had a false-positive syphilis test, looked up stuff online and found out that false positives are pretty common for folks with autoimmune disease, and even got me to laugh by telling me what a great excuse it would be for any crazy behavior: "Sorry I got all syphilitic on you!"

I also e-mailed my former rheumatologist in Denver and asked her if I'd ever had the test under her care, figuring that if there was an older, negative result on record, that might help out.

The next morning, the hospital called me bright and early, saying they had a bed ready for me, so come on down. In the meantime, I'd put in a call to my rheumatologist here, and when I explained to the nurse who answered that I'd been told I had to be admitted to the hospital that morning, I was relieved when she said she'd pass the message on right away.

Within about ten minutes, the phone rang, and it was my rheumatologist. She's a no-nonsense kind of person, and talking to her felt strangely like I imagine it feels to talk to your lawyer when you've been arrested. Finally, someone who wasn't panicking (and making me panic). She was 99.9% sure it was a false positive, and didn't understand why the additional testing needed to be done in the hospital. I'd still need to check in, but she said, "Just pack as if you were going to a hotel for a couple of days. Bring your own pillow. I'll see you over there."

The relief was tremendous. Not complete, for sure, but why hadn't she been the one to give me the news in the first place? What was all the overreacting about? Hadn't any of these people talked to each other?

Around 10 a.m. I checked in to the hospital and went up to the 8th floor, where they put me in a private room and told me to have a seat. And there I sat, for 45 minutes, before anyone came by.

Finally, the nurse came in. At that very moment, my cell phone rang.

It was my rheumatologist: "OK, I talked to the head of infectious disease, and he's sure this is a false positive. So you don't have to check into the hotel."

"Well, I'm already in the hotel room."

"Hmm. Well, let me talk to him again and see what he wants to do. But for the moment, let's just assume that we're going to do the confirmatory tests on an outpatient basis. I'll call you back."

I hung up and explained this to the nurse, just as her pager went off and she got a message to the same effect. So she left the room to go make a call from the nursing station to find out what's going on.

A couple minutes later, Tweedle Dee and Tweedle Dum--aka the floor resident and his med-student flunkie--walk in. "Ms. Hathaway, we're here to take some information from you and to get your vitals and everything. So, what's going on?"

"Well, technically, I'm not actually a patient," I say, explaining that it looks like I'm going to be discharged. And frankly, I just don't want to tell this story again to these guys.

But the resident persists. "Well, until we know for sure, let me just take some information from you."

Mistake #2: I should have just told him to f#@k off. I mean, he was perfectly nice and all, but really--he didn't need to know, at least not right then. But I went ahead and explained the whole story, which was actually beginning to seem a little funny, and when I got to the point where I said, "And so they think I have syphilis," he turned to the med student and in a pseudo-sympathetic stage whisper, says, "I think you'd better shut the door."

Fast forward through about half a dozen more cell phone calls, pager alerts, and mixed messages, and they finally give me a lab order and send me off to have blood taken for the second round of tests. And I'm out of the hospital two hours after I was admitted, twelve hours after being told I'd be there for two weeks.

WTF?

I mean really: W. T. F.?

The two additional tests they ran both came back negative, as my rheumatologist expected they would. I got an e-mail back from my former rhuematologist in Denver expressing shock that anyone's first reaction was to admit me to the hospital before consulting with an infectious-disease specialist and running further tests. The most basic Google search instantly turns up information explaining the prevalence of false-positive syphilis tests not only in people with autoimmune disorders, but with lots of other conditions, as well.

Why on earth had everyone jumped to the worst possible conclusions, and immediately proposed the most dramatic and extreme treatment?  I mean, the one upside of managed care is that it usually insists on starting with the cheapest, most basic intervention possible before hauling out the big guns.  Here we went straight from border skirmish to nuclear winter.

The Health Sciences Campus here at WVU has come under a lot of fire for its lack of coordination and communication, and its incessant territory wars. I guess it all seemed like the usual petty academic squabbling until I got caught in the middle of it.

And I know that this situation isn't unique to WVU, either: this was my first experience with the scary machine that is health care these days. Once you get caught in its gears, you feel pretty much powerless to extract yourself. I remember my bitter sense of betrayal after my dad's brain surgery last fall, when we didn't learn until afterward that he wouldn't be allowed to go home once he'd recovered, but would have to be admitted to a rehab center. And once there, being told that if he couldn't meet certain benchmarks, he'd have to go into a nursing home.

It's amazing how quickly one's body becomes public property in these situations...and my situation was certainly far, far less dire. But it still felt like I'd been sentenced to prison without a trial.

I've learned the hard way that even when you're panicking and the voice of Medical Authority is booming orders at you, you still need to advocate for yourself. I should've done it the day I saw Dr. #2. But at least I had another doctor who was willing to go to bat for me when it mattered most.

Still, I lay it all at the feet of Dr. #2.  Why didn't he call me to deliver the news himself?  And in the eight hours between his resident's message and the one from my primary-care physician, why didn't anyone think to include my rheumatologist in the conversation?  Or do some basic research to find out what the real liklihood of the test results being accurate was?

I'm glad that it now seems mostly like a funny story, if a maddening one.   For sure, I'll never go back to Dr. #2's office again, and if I ever see him around town, look out:  I might go all syphilitic on him.


*Turns out that Reiter's Syndrome isn't even considered accurate terminology for that disorder anymore.  More evidence of Dr. #2's so-called "expertise." 

The eyes have it

About six or seven years ago, I was diagnosed with an autoimmune syndrome called Behcet's disease.  I'll spare you the gory details, but it was pretty debilitating the first few times it flared up, and prompted a couple of comments I hope never to hear again at the doctor's office:  "Holy cow, I've never seen anything like that!" followed by "Do we have a camera around here?"  (Thankfully, they did not.)

In the intervening years, I've been incredibly lucky:  lucky, first of all, to have a great doctor in Greeley, Michelle Stoltz, who diagnosed it as Behcet's almost right away, since I've since read horror stories about people who went years before being properly diagnosed.  Lucky, too, when my first rheumatologist left the medical profession altogether and shipped me off to another rheumatologist in Denver.

The doctor I saw there, Kathryn Hobbs, immediately nixed my original rheumatologist's treatment option: basically, a steady diet of prednisone that had caused me to gain a good fifteen pounds and barely kept a lid on the symptoms (and often didn't work at all).  I could have wept for joy, I hated the prednisone so much.

I was also very lucky that Dr. Hobbs was willing to battle my health insurance company to get me on Humira, an anti-TNF drug formulated for people with rheumatoid arthritis...but she said it showed a lot of promise for people with Behcet's, and eventually she convinced the insurer to pony up.  And almost immediately, the symptoms were gone.  Totally under control.  Lucky, indeed.

I was also lucky that when I moved and switched insurance plans, the new insurer agreed to cover the Humira without much of a fight.  The complete lack of symptoms for years on end almost had me thinking that maybe the disease had gone away--maybe it had never been real?

And then, about six weeks ago, my right eye started to feel weird--sore, and achy, and red...and I started having trouble seeing. 

Several students I knew had pink eye during spring semester, so I figured that might be the problem.  But since Behcet's can involve eye inflammation (which--luckily--I'd never had), I figured I'd better get it checked out.   And sure enough, I had uveitis, inflammation of the uvea that's a very typical symptom of Behcet's.

Fortunately, it responded well to the prednisone eye drops prescribed by my oddball opthomologist, who's a dead ringer for Groucho Marx, both in looks and demeanor.  Did the drops for several weeks, tapered off of them, eye felt fine.

Went in last Friday for a follow-up appointment, only to have Groucho tell me that the inflammation is back, and in both eyes this time.  Back to the prednisone eyedrops.

Autoimmune diseases are very strange; I think if I'd ever had the slightest interest in/talent for medicine, it would be a fascinating specialty.  You sort of have to befriend your disease--get to know its rhythms and its perverse sense of humor, its fondness for irony and the long con. My frenemy Behcet's doesn't like to be locked out.  Bar a door, and it finds a cracked window.  Seal the window, and it slides through a crack in the siding.  Deterred on one front, it mounts a campaign from the opposite direction.

I'm not writing this to seek pity or even sympathy; as I've said, I've been incredibly lucky at every turn of this journey.

There's a quote from writer Janet Burroway that I have stuck on a mirror in my bedroom:

Why, I say, should I ever have bitterly blamed [my body] for such trifles as I have blamed it for:  for having too much flesh in this spot, too little muscle in that, for producing this wrinkle, that sag, that gray hair, or this texture?  Dear body!  My dear body!  It has gone about its incessant business with very little thanks.

For me, it's a useful reminder that for every small, visible thing that our bodies do wrong, they're doing countless invisible things right, and continually.  I marvel at both the stability and the capriciousness of the human body.

But the capriciousness--that's the issue.  Of course, autoimmune disease mirrors life in that way:  our sense of control is purely imaginary, a ruse to suppress the unsettling reality that at any moment something could happen to blow everything sky-high.

And occasionally (very occasionally, the older you get, I'm discovering), the body surprises us by doing something extraordinarily good that we didn't know it was capable of doing, too:  in my pathetic case, running a couple of miles on the treadmill.

I'm trying to avoid using the rhetoric of betrayal around the Behcet's, and I hope to avoid using it around aging in general.  But our bodies do fail us in one profound way:  like the portrait of Dorian Gray, they evince all the decrepitude while the selves they contain go on feeling like they're twenty-eight.  At least, that's the age I feel like I still am in my head.  How about you?

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N. B.:  My friend Jane has written far more eloquently about the strange dichotomies of the self and the body here and here.