Wednesday, September 24, 2008

In praise of real specialists and small town doctors

Dr. David Bell is the town doctor for the small community of Lyndonville NY, up near Lake Ontario. He set up his practice there in 1977. In 1985 there was a viral outbreak followed by an upsurge in cases of Chronic Fatigue Syndrome, which led him into what became his life's work. Or, I should say, his second life's work, as he continues to be the small town doc decades later.

Along with Dr Peter Rowe at Johns Hopkins University, Dr Bell has become the foremost authority on Chronic Fatigue in the nation (he advises the CDCP).

He is the specialist we drove to visit on Monday.

The experience was amazing.

In three hours, using no equipment more sophisticated than a blood pressure cuff and a reflex hammer, Dr. Bell managed to make my son's body demonstrate virtually every symptom we had seen at home over the past two years.

He shared with us the technical names for all the phenomena we had observed (but could never find written down anywhere), and talked us through all the ongoing research. I won't take you through it all (although if it is germane to you personally, let me know and I'll be glad to share), but will summarize thus:

1. We know now exactly what sort of illness the CFS actually is, and how (to the extent that the research has been done) it affects our son's body. [The effect begins with an abnormal cortikyne response to a virus and leads to a dynamic abnormality in the cellular mitochondria in ATP processing; see, I told you it was complicated--but I understand it now.)

2. We understand how his symptoms related to his illness, and what his prognosis is. (Even if not treated, we can expect an 80% chance of a complete recovery within two years.)

3. We understand the limited treatment options available.

Only if you have ever had a loved one with a serious illness will you understand this: part of the news was not good, but knowing is always better than not knowing. The mind can create hells more profound than nature even attempts.

I'm exhausted, as you may have concluded by the light and limited nature of my posting for the past couple of days.

But I am also strangely elated: we're not crazy; our son has a recognizable illness; there are decisions we can make to improve both how he feels today and his long-term prognosis. These are--as the credit card commercial says--priceless gifts.

Oh, and there is one thing more.

Dr Bell hangs out his shingle in a tiny community health clinic. We paid a very large consulting fee for three hours of his time, a fee I don't begrudge, and a fee unlikely to be covered by insurance.

What I suspect that Dr Bell does with that fee is use it to provide free or reduced cost medical treatment to the families in his town who don't have insurance or cannot pay. He's that kind of man, and it's that kind of town.

There's no government involved in that transaction, just an old-fashioned country doctor who has become a national expert.

We don't see much of that any more, which says an awful lot about what's wrong with America.


Waldo said...

This is exceptional news- especially the potential for improvement! I am greatly relieved.

Shirley Vandever said...

Encouraging news, Steve. Thanks for sharing.

ElfNinosMom said...

I am thrilled to hear that your son will likely recover in a couple of years. I'm sure that peace of mind was worth every penny.