National Lyme Report - Lyme mom's voice of experience: Save yourself from Lyme

Lyme mom's voice of experience: Save yourself from Lyme

Questions? Comments? Write: National Lyme Report Editor Derek Clontz. He reads and answers all e-mails, usually within minutes and always within one business day.

Editor's Note: Nobody speaks more eloquently on the risks and dangers of Lyme than patients who have lived through an infection and fought to get the treatment they deserve. And in the heartfelt letter below, you'll read one young woman's gripping account of the frustrations she endured after she got sick and suffered horrendously while doctors scratched their heads and said, in effect, "Danged if we know what's wrong with you."

Unlike measles or chicken pox, which are easily diagnosed and usually run their course without complications, Lyme is difficult to diagnose. And it also poses the threat of serious, life-threatening complications.These symptoms develop over months and years. In time, they lay the patient to waste physically, psychologically and emotionally - if not in an early grave.

Letter to the Editor: Be your own advocate on Lyme disease
Danbury News Times, CT

We live in a Lyme endemic area with a lack of knowledge regarding the seriousness of Lyme disease. If not diagnosed and treated promptly, it can become a chronic, debilitating illness.

My family and I experienced the consequences from being misdiagnosed. I suffered two years with various symptoms like excruciating back pain and overwhelming fatigue.

Mild panic attacks, consisting of facial paralyzation and difficulty speaking and writing, became common. Muscle weakness in arms and legs was soon followed by muscle aches and pain and then joint pain and soreness.

I could not tolerate bright lights and loud noises. I confused letters, numbers and words. My symptoms multiplied, as did the intensity and frequency. My health was quickly deteriorating.

Consultations with seven physicians, blood tests, MRIs and three emergency room visits for excruciating back and muscle pain and I had no diagnosis.

I became bedridden, needing assistance caring for my home and three children. I reluctantly resigned from my place of employment.

I met with an infectious disease specialist, began antibiotic treatment and immediately responded.

In two years, I have endured 14 antibiotics, intramuscular shots and intravenous antibiotics. (I developed gallstones and gallstone attacks as a side effect.)

At the onset of my illness, like many patients, I did not present with "classic" Lyme symptoms: rash, fever, chills, joint pain.

After four years, my condition has improved. It remains a lifestyle of uncertainty and limitations from chronic pain and discomfort, fatigue and daily pain medication.

Once an active, working mother, I am still unable to work and live the healthy, productive lifestyle I once knew.

I have learned it is not a choice but a necessity to be your own advocate. My family and I continue struggling with my illness with strength, determination, courage and the hope for a healthier future.

Annemarie
BETHEL

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Lyme mom's voice of experience: Save yourself from Lyme