Dear Pa legislators: Lyme disease isn’t always diagnosed by a test

The following article addresses Lyme disease (LD) testing and how inconclusive the tests can be.  Linda Olley, a registered nurse and leader of the Harrisburg Lyme disease support group, correctly recognizes that the LD bacteria is rapidly mutating making it difficult to properly diagnose.

Many LD tests only test a few of the more than 300 known LD strains.  Since LD tests are inconclusive, having a good Lyme Literate Doctor (LLD) perform a clinical diagnosis is key in determining whether or not you may have LD.

Excerpted from  ( Posted: 08/07/2010 )

I am a great lover of the outdoors. I grew up in a cottage on the Susquehanna River, and as an adult I owned a summer cottage from 1970 to 1994.

But one of the realities of the outdoors in Pennsylvania is possible exposure to ticks with Lyme disease. It takes only one bite from an infected tick to cause the disease.

Unfortunately, I got that one fateful bite sometime in 1984. 

I awoke with flulike symptoms: stiff neck, chills, fever, migraine-type headaches and general malaise. I was put on an antibiotic for 10 days. The symptoms disappeared — or so I thought. Three months later, I experienced more joint pain and swelling, particularly obvious in one wrist.

Despite a referral to a rhumatologist and extensive testing, including for Lyme disease, all test results were negative. I was diagnosed, incorrectly, with atypical sero-negative rheumatoid arthritis. It was only later — after more pain, suffering and extensive testing — that I learned the truth.

My story echoes that of many Lyme disease sufferers: Sometimes our results are negative in the formal diagnostic test even though we have Lyme disease. Medicine is not an absolute science.

My personal experience and my years of work as a registered nurse lead me to support critical legislation for Pennsylvania: Senate Bill 1199, the Lyme and Related Tick-Borne Disease Education, Prevention and Treatment Act.

It would protect physicians, allowing them to use clinical discretion in diagnosing and determining treatments for all patients with Lyme and other tick-borne diseases. Three other Northeastern states have passed a similar Lyme bill.

Lyme is the No. 1 tick-borne illness in the nation, with more than 100 strains in the United States and 300 strains worldwide. It is reported in all 50 states and 65 countries in astounding numbers nearing epidemic proportions.

The problem with Lyme disease testing is that the tests are no longer sensitive to identify the many species of Lyme. While lab tests are valuable diagnostic tests, they are usually not definitive when considered alone, but in conjunction with the patient’s clinical presentation and history.

For the full article:

~ by Rob on August 7, 2010.

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