Lyme Disease: The Expose'

OK, OK... everybody, simmer down. Don't knock each other over in your enthusiasm to be the first in line to read. I know you all hold your breath, anticipating each syllable from my fingertips here, but we'll all enjoy it more if no one gets trampled in the process. That's it... nice job everyone. Line forms to the right.

As you may or may not know, Mr. Eclectic has Lyme Disease. Chronic Lyme Disease.

Let me back up. In April '08, shortly after surgery involving general anesthesia, he experienced acute Bell's Palsy on the left side of his face which left him looking (and feeling) for a time like a stroke victim. As we've since learned, general anesthesia is often a trigger for dormant Lyme to become active. The doctors treated the palsy with steroidal anti-inflammatory medication, a fairly common and standard approach. It was only mildly effective, but within a few weeks, the palsy had mostly disappeared and we thought (thankfully), "That's that."

A few weeks later though, it reoccurred.

We learned then that "true" Bell's Palsy is not recurring, and in fact, "recurrent Bells" is often a symptom of Lyme Disease. Well. OK. So he was tested for Lyme Disease.

Nope. Test was negative (thankfully). More steroids.

But, even over time, Mr. Eclectic didn't get much better. Eventually, his face stopped looking like "Two-Face" from the comic book stories, but his facial nerve is still affected and occasionally painful even now, nearly two years later. Over the next several months, he also began experiencing extreme fatigue, general aches and joint pain, and most troublesome of all, cognitive difficulties such as trouble finding words and short-term recall deficits. The ear, nose & throat doctor treating him had nothing more to offer, and it is only through pure serendipity that a dear family* member was able to point us to research on Lyme Disease which convinced us that perhaps we needed more investigation into the possibility that Lyme might be responsible for his condition. So, we made an appointment with a specialist in Seattle in early December 2008.

Did you know that the currently AMA-approved Lyme Disease tests actually do not test for the presence of the disease but rather, one (or a few) of the many, many antibodies that the body may produce in response? Lyme is made up of a complex of organisms, and these are carried by ticks, mosquitoes and other pests. It can be transmitted through insect bites and other methods, and those the exact mechanisms are still being researched and discovered. Not all of the organisms are present in each bite or each carrier, so not every Lyme Disease sufferer will carry the same combination of pathogens. What does this mean? It means that traditional tests for Lyme have an excellent chance of NOT being able to identify whether an individual actually has been exposed to Lyme Disease.

Back to Mr. Eclectic... After several tests, it was verified that he is, in fact, dealing with Lyme Disease. His is a chronic condition that can take 2 or more years to treat, made more difficult by the steroids that had been prescribed during those critical weeks after the initial onset of active Lyme. The steroids he was given disabled Mr. Eclectic's immune system response, thus enabling the Lyme organisms to garner a more tenacious hold on him.

Anyway... long story continuing, we hope that the experimental treatment he is undergoing will ultimately result in a full cure from his disease. But the treatment is arduous, expensive, not covered by insurance, and involves side-effects which are frustrating. The disease itself continues to make itself felt, and some days are just nothing but a pain in the ass for my usually even-keeled and energetic husband. His most recent appointment with the specialist was somewhat discouraging, in that the disease seems to have made a come-back bid, and now more tests are necessary to identify what -- if anything -- in his system is blocking the treatment regimen. Ugh.

Through it all though, Mr. Eclectic remains steadfast. I'd have taken to my bed months ago if it were me, but he battles the fatigue and all the rest of it in heroic fashion. Perhaps the most remarkable thing about it is how unremarkable the disease appears. I mean, after the first showy episode of palsy, a casual observer would never guess that there's anything wrong. Which is both good and bad, I guess. Anyway, I just thought I'd take my bully-pulpit here to say that Lyme Disease sucks and I'm ready for it to leave us alone now. And that's all I have to say about that.



*Friends who become family are the best of both.