Bull's Eye: unraveling the medical mystery of Lyme disease

Bull's Eye: unraveling the medical mystery of Lyme disease by Jonathan A. Edlow, M.D. (New Haven: Yale University Press, 2003)

Background

In June 2001 I came down with a mysterious illness that quickly landed me in the hospital. Before too long, I could barely walk nor readily take a pee. Sharp pains ran up and down both legs and there was a spreading lack of sensation from the waist down accompanied by extremely sensitive, constantly painful feet.

After a myriad tests and proddings by all sorts of interns, residents, and specialists, it was determined that I was in fact quite sick and getting worse. Based on a recent camping trip to Cape Cod and a strange red spot in my groin area (already disappeared from sight) Lyme disease was suspected. All the other testing and probing had eliminated a large number of nasty possibilities, but the tests for Lyme revealed nothing.

 

Nevertheless, it was decided that, since I was continuing to get worse, we should assume a bacterial origin and start antibiotics, Ceftriaxone in this case. Well, within a day or so, my symptoms showed a small improvement. Diagnostic victory was declared. After the installation of a catheter in my arm, I was sent home for a month of intravenous treatment. Not to drag this on, by August, I was going to the office for a couple of hours a day. By New Year's day I had started to walk on a treadmill again. Today, I am continuing to recover. L'Hermite's Sign is almost completely gone and the chronic pains in my feet amazingly still improve. My regular physician, Stanley Sagov, always introduces me to his student doctors as, "an interesting case", but Edward Wolpow, my neurologist has sent me on my way with the parting words, "Try not to get neurotic about this, maybe you will continue to heal, but maybe you won't".

Deer Tick (ixodes scapularis)

Adult on finger

 

larva, nymph, adult

(both images borrowed without permission from the American Lyme Disease Foundation web site (http://www.aldf.com/)

 

 

Bull's Eye is a terrific book on a number of levels.

First, there is the tale of how Lyme came to be recognized as a disease with appropriate backtracking to Europe and elsewhere for discussions of earlier intimations. The early phase of the discovery included mysterious rashes and arthritis that finally is recognized to have a geographic pattern. Then researchers began to do the basic epidemiological studies required. But, meanwhile all of the standard medical tests for bacteria and viruses as a potential source provided no real leads. Then, there are the examples of the various medical specialties trapped in there own worlds looking at the range of symptoms that cross fields like dermatology, rheumatology, infectious diseases, cardiology, and neurology being among the prominent ones. Since there was no clear origin for the disease, if in fact it was a disease, each specialty tended to head of on its own track.

At the request of some doctors from Yale patients began to save ticks and other insect that had bitten them. This lead finally to the deer tick. And this is a second delight of this book. the author pauses to provide fairly lengthy discussions of sometimes technical topics in an accessible language.


(image borrowed without permission from http://www.aldf.com/DeerTickEcology.asp)

Meanwhile, there was still no direct connection between the ticks or any other biological agent and Lyme disease. Nevertheless, the usual trial and error of medicine had already produced two approaches to treatment, one centered on the notion that the cause was a bacterium, and the second that a virus was the troublemaker.

By the late 1980s, research has shown that Lyme disease was caused by a spirochete bacteria named B. burgdorferi that was transmitted to human beings through a bit by an infected tick, Ixodes dammini. Once infected people typically got a rash that was red, flat and round with a central clear spot, the bulls eye.

 

Left untreated, the rash would ultimately resolve itself. In many patients no further symptoms would arise. But in many untreated cases stage two symptoms would develop. About 15% develop neurological problems like meningitis, Bell's palsy, radiculitis, and others. About 10% of the untreated developed inflammation of the heart and finally about 60% developed arthritis, often of the knee.

So why is Lyme disease so controversial?

Here again, Bull's Eye provides an educative trip through some pretty complex issues. First, there is the issue of proper diagnosis of Lyme. In my case, several tests at different times never showed that I had in fact been infected. Bull's Eye details the problems with diagnostic tests and the likelihood of false positive and negative results. For the male of the species, this discussion was a useful revisit to the problems with the current tests for prostate cancer.

 

Then, there are those Lyme disease patients who develop long-term problems that are extremely resistant to treatment. And, given the vagaries of the diagnostic tools, it is perfectly possible that some or many of those late-stage patients may not be suffering from Lyme at all.

This has lead to continuing controversies about what type of antibiotics to use and how long the treatment should run. Given the fact that these intensive courses require intravenous methods, keeping a person on antibiotics for months at a time raises all sorts of issues of iatrogenic outcomes, cost, and efficacy.

Here is a list of symptoms taken from the American Lyme Disease Foundation web site (these match up very well with the Appendix B list in Bull's Eye):

Localized Early (Acute) Stage:

  • Solid red or bull's-eye rash, usually at site of bite
  • Swelling of lymph glands near tick bite
  • Generalized achiness
  • Headache

Early Disseminated Stage:

  • Two or more rashes not at site of bite
  • Migrating pains in joints/tendons
  • Headache
  • Stiff, aching neck
  • Facial palsy (facial paralysis similar to Bell's palsy)
  • Tingling or numbness in extremities
  • Multiple enlarged lymph glands
  • Abnormal pulse
  • Sore throat
  • Changes in vision
  • Fever of 100 to 102 F
  • Severe fatigue

Late Stage:

  • Arthritis (pain/swelling) of one or two large joints
  • Disabling neurological disorders (disorientation; confusion; dizziness; short-term memory loss; inability to concentrate, finish sentences or follow conversations; mental "fog")
  • Numbness in arms/hands or legs/feet

You might ask, "How do I avoid Lyme?"  The answer is, "With difficulty."


(borrowed without permission from http://www.cdc.gov/ncidod/dvbid/lyme/riskmap.htm)

For detailed instructions on how to reduce your exposure to Lyme go to this CDC web page (opens new window).

As a closing note, if you develop any of the symptoms of the "acute" stage, get yourself immediately to a doctor. A standard course of oral antibiotics has proven to be amazingly effective in controlling this nasty disease.