Thursday, June 06, 2013

At the Mercy of a (Merciless) Tick

"Can you run?" I asked myself this evening. I sat in my car in the school parking lot, looking out at the rain. I was there for a middle-school band concert, and about 20 yards of downpour separated me from the shelter of an overhang.

I had two options. Option One was to use an umbrella and take that wet umbrella into the auditorium with me, thereby risking two possibilities: ending up with the wet umbrella on my lap if the place was crowded, or putting the umbrella on the floor and going home without it. Option Two was to leave the umbrella in the car and run for it.

I ended up leaving the umbrella in the car and walking. I don't know if I can run anymore. I discovered last week that I can't move as quickly as my 23-month-old grandson. It was a rather horrifying discovery, as he had run out into the road, and I was running after him. Or attempting to. At the time, my right hip was particularly bad. It's better now, but that still leaves the other stuff—knees and back. So I walked.

It's the sort of thing we blame on age, particularly  easy to do when you've turned 70. But when my dad was 70 he rode his bike, went bowling, hopped in his boat, and planted a garden. One of my cousins is a month older than I and goes to yoga three times a week. A close friend is in her mid-80s, walks everywhere, and just got back from England. I can't imagine traveling. As for walking, when I went to Yale for a reunion in 2007, I walked everywhere with my camera. When I returned last year, walking was a slow, painful process, with many stops to lean against a car and stretch out my back.

Before I left for Yale last spring, I contacted a top researcher of tick-borne disease at the Yale School of Public Health. I told him about my many tick bites and about a set of unusual and very specific symptoms I experienced with two of the bites, in 2010 and 2011. And I told him that a few of those symptoms never went away. From what I read, it sounded to me as though I might have babesiosis, a Lyme co-infection caused by Babesia, a parasite that affects red blood cells.

The researcher was very nice. He didn't patronize me at all. But he was from academia and I was from the tall grass where the ticks hang out, in rural Pennsylvania where the medical community is clueless about tick-borne illness. "I doubt you have Babesia," he said, "because it hasn't been reported in your area."

I told him there are two reasons for the lack of reporting. First of all, the doctors here never heard of Babesia. That reason precludes the need for other reasons, but I had one anyway. Even if a patient (like me) suspects she has Babesia and informs her doctor, and even if the doctor (like mine) agrees to order the tests needed to diagnose it, they discover that the testing is prohibitively expensive ($3,000).

I also told the kindly (and brilliant) researcher that when I worked as a newspaper reporter a couple of years ago I did a story on Babesia and how it has infected the public blood supply. The Red Cross is struggling with this, as there's no economically feasible way to screen for it. Many people carrying Babesia are symptom-free. They're lucky, but it makes things tough for the people managing the blood supply. Not to mention those who receive the transfusions.

To be continued......


crystal said...

Hi Susan,

I hope you're feeling better.

The researcher's argument is so circular - no one can have it because no one has reported it, and no one reports it because no one has it. Now that medical information is widely available to the general public, doctors are going to have to be more responsible. It's really frustrating to patronized by "experts".

Bridgett said...

GAH. What Crystal says. It is really frustrating to be patronized by experts. I hope you find an answer. as I said to a friend today who is having mysterious symptoms, just because they can't name it doesn't mean you're making it up .

Susan said...

Honestly, he really wasn't patronizing; as learned as he is, he almost sounded like an innocent when he told me it hadn't been reported. Academia (and the traditional medical community) just doesn't get it.

Bridgett, does your friend live in tick country? I hate to sound like one of the Lyme Radicals, but ticks are always something to consider. The LRs blame everything on ticks. You name it, a tick did it.

Eulalia Benejam Cobb said...

I am sorry you're in pain. It's terrible to lose mobility. I wonder if you've checked the possibility of arthritis? Also, can Babesia be treated even if you haven't been tested for it?

Will be looking for updates.

Susan said...

I'm sure I do have arthritis. And we share a history of fibromyalgia. The Lyme radicals tell us that fibromyalgia/chronic fatigue are tick-based (along with everything else, apparently), but I'm not automatically buying into all of it.

Babesia is related to malaria, and is treated with two drugs: one common and relatively inexpensive, the other in the $1,000 range. So I think a diagnosis would be nice. I just read on the CDC website that it is sometimes diagnosed with a blood smear. I'm going to look into this, and want to talk to the Yale researcher again.

Susan said...

I meant to add that the pain isn't nearly as difficult as the inability to breathe properly (I've always taken breathing rather seriously) and the muscle weakness. These are two of the symptoms that have lingered on for a couple of years. There are others.

Bridgett said...

No to the tick question (I mean, yes, but in her case it's related to NSAID overuse and now her body doesn't make enough acid in her stomach to digest and absorb nutrients). It's always something.

Susan said...

The way NSAIDs are promoted, I wouldn't be surprised if that will happen to a lot of people.

Bridgett said...

It wasn't the first friend I'd talked to with the problem stemming from NSAID overuse.