by Mary Jane Heppe

I probably contracted Lyme decades ago without seeing a tick or a bull’s-eye rash, but only began exhibiting early-stage symptoms in 1998. I had been a major athlete and was terrified that I’d lost energy and use of my body.

I asked for two Lyme tests in Virginia in 1999, and three more in Oregon in 2003 & 2004. Four came back “negative” and one was “maybe.”

From 2003 until 2005, I was misdiagnosed with piriformis syndrome, arthritis, hip pain syndrome, multiple sclerosis, adhesive capsulitis, early onset menopause, depression, and fibromyalgia.

One doctor tried to send me to a psychiatrist, a common experience for those with Lyme disease. I was effectively bedridden by early 2005. I was astonished and frustrated and questioned the myriad misdiagnoses – no one could give me a straight answer! The diagnoses kept changing, and no treatment regime offered long-term relief. This is when my husband and I began to be self-advocates. We started researching online.

One person in Hood River, Oregon, saved my life – not a medical doctor. That person led me in the right direction and urged me to test again. This time we sent my blood sample to IGeneX in Palo Alto, California, one of the best testing labs for Lyme disease.

In February 2005, I was finally diagnosed with Lyme disease by a California physician because there are no Lyme-treating M.D.’s in the entire State of Oregon. This time, the treatment protocol (long-term antibiotic therapy) was successful and has led to steady improvement over time.

Finally, out of bed

After four months of antibiotics, I could get out of bed. I was able to walk again. Six months later, I was jogging. My “restless leg” symptoms, cramps, spasms, convulsions, tremors, and burning had disappeared. By December 2005, severe arthritic pain, spasms, and stiffness disappeared. By February, 2006, fatigue disappeared. In March, 2006, I could ski again. By August, 2006, some cognitive capacities had returned – better comprehension and retention. (I could not read or write for two years.) Major depression disappeared ~ I became a new person!

Lyme disease is treatable. Extended antibiotic therapy and supplements saved my life and the lives of countless other sufferers.

Looking back on my own experience following just 30 days of treatment (the standard guideline), improvement was marginal and far short of my current situation. For me as for many others, long-term treatment was the key to success. Note: the typical treatment for tuberculosis is at least six months of antibiotic therapy.

Here’s what you can do

If you are in a tick-infested area, examine yourself regularly and remove any ticks promptly with tweezers using a firm, steady motion – do not use Vaseline, alcohol, gasoline or heat. Do not twist or squeeze the tick as this could force pathogens into your body.

If you are bitten by a tick and can save it (e.g. in a small vial with a blade of grass), consider having it tested. Save and send the tick in for testing. It’s much easier and significantly cheaper to test the tick than it is to test a person. An infected person may take weeks or months to test positive ‐ tests catch only about 50% of the cases. Some people infected with Lyme disease never test positive on any Lyme test.

If you see a bull’s-eye rash around a recent tick bite, that is a given diagnosis for Lyme disease. You don’t even need to get tested. What to do? Call your nearest Lyme-literate health-care provider.

Contrary to popular belief, the rash does not always look like a bull’s-eye and in fact may not even occur. In the state of Oregon, a positive diagnosis for Lyme is reported to the state if a physician personally sees a rash and blood test results are positive.

It is important to know that there is a two-tiered testing system for Lyme disease in the U.S. If the first tier–the ELISA test–is positive, only then is a second test, called the Western blot–recommended. Unfortunately, the ELISA is known to be falsely negative nearly half the time. Thus, many people never receive the additional test and are told they don’t have Lyme disease, when they may actually be infected.

Lyme is treatable. If you suspect you have it, I urge you find a Lyme-literate practitioner to help you investigate further.

Mary Jane Heppe, an Oregon resident, has been a national Lyme disease advocate and educator since 2006.