Sunday, April 19, 2009

Lyme disease motivates local woman to save others

Wednesday, 15 April 2009

Note: North Branch, MI resident Charlene Smith is using May, Lyme Disease Awareness Month, to share her devastating experience. She hopes her story will help educate others and raise awareness about Lyme disease and tick-borne illnesses.

By Heidi Schauer
Guest writer

Imagine waking up one morning after visiting neurologists, rheumatologists, hematologists, infectious disease specialists and a gastronomotrist, and no one can tell you exactly why your health is depleting.

Your symptoms continue to worsen. Your foot has become lame. You have a loss in wages. Still, there is no reasonable diagnosis. You undergo a hip biopsy, a fat aspirations test, three MRIs, a CT scan, a bone density test, and an EMG, and your body continues to shut down.

Charlene Smith doesn’t have to imagine this scenario. She has lived it.

Minnesotans live in a high-risk area for Lyme disease, a bacterial infection most commonly contracted from a tick bite that initially may cause flu-like symptoms. Though it seems people in healthcare should be able to diagnose this disease easily, for many, that is not the case.

Pictured: Once North Branch resident Charlene Smith discovered she had Lyme disease she noticed her symptoms were comparable to those of her horse Sierra. Sierra suffered a “mysterious illness” for seven years before a Lyme disease test confirmed the horse, as its owner, had the disease. After beginning treatment in November 2008 Smith’s health continues to improve, and Sierra is now symptom-free. (Photo by Heidi Schauer)

Smith’s difficult journey began in June 2000 when she discovered a tick bite on her leg. A bullseye ring provoked a trip to her family practitioner. That individual did what most do: prescribed the antibiotic Doxicycline.

Unfortunately for Smith, the medication made her sick and unable to complete treatment. At that time, her doctor told her she “probably didn’t have Lyme disease anyway.”

Smith had no reason to question that advice.

Experiencing random rashes and constantly changing joint pain, Smith did not connect her subtle symptoms to Lyme disease. By 2006, in addition to joint pain, she suffered extreme fatigue, insomnia, heart palpation, numbness in her face, tingling in her fingertips, and her feet became constantly swollen.

She also had an increase of complications with her cognitives. It was at this time the first of several ELISA tests was administered. The test, believed to be 30-60 percent accurate, is the most common test conducted to determine Lyme disease. It produced negative results leading Smith’s doctors to assume Lyme disease was not the cause for her body shutdown.

In August 2007, Smith’s illness resulted in her left leg experiencing a “foot drop.” She was hospitalized and began a long and frustrating process of seeking answers from the top medical facilities in the state.

Taking control

With misdiagnosis and medications that produced little if any improvement, Smith took her health into her own hands and began a mission for self-diagnosis in 2008.

After many sleepless nights and binders upon binders of information a call to a complete stranger became the medical moment that changed her life.

Jan Thietje is a member of the Minnesota Lyme Action Support Group (MLASG). According to Smith, Thietje and the other members of this organization saved her.

Said Smith, “This was my first glimmer of hope, these women, and these are just average women trying to save lives. I think I owe my life to them. Without them I would not be diagnosed.”


MLASG, founded by Anne Myre in April 2006, began with 15 members. Now at 289 members, it is a fast-growing organization that supports individuals suffering from Lyme disease, one of the fastest-spreading infectious diseases in the United States.

The organization strives to raise awareness by educating the public about Lyme disease and other tick-borne illnesses, and how they can be prevented.

Each day more Minnesotans search for answers and hope for their battle against Lyme disease. Some have been misdiagnosed with diseases such as Fibromyalgia, Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), Chronic Fatigue Syndrome or Alzheimer’s, while others have family members or friends suffering from a tick-borne illness.

Support group

During the second Tuesday of each month individuals in this organization gather at Hosanna Lutheran Church in Forest Lake to discuss current issues, listen to public speakers, plan education and tackle the obstacles of making Lyme disease and tick-borne illnesses a priority in Minnesota.

From job loss, paralysis, doctor misdiagnosis and treatment denial, everyone in the room has a telling story. Some are at a stage of wonderment asking, “Why me?” and trying desperately to figure out what to do next.

Others have emotionally evolved from anger to hope and are doing whatever they can to help others.

During one of these MLASG meetings it was suggested that Smith request an IgeneX test. This is an additional test a doctor can administer to detect Lyme disease. The cost is paid out of pocket, and an insurance company may or may not reimburse you.

Once the test is administered it is sent to a California lab that specializes in Lyme disease, and the test results are given to your doctor. Results cannot be sent directly to the patient.

When Smith finally got her results, as she and her husband had suspected for years, Lyme disease was identified.

With a loss of faith in the doctors she had encountered, Smith took her IgeneX test results to Sartell—one of three Minnesota Lyme-literate clinics currently treating chronic Lyme patients.

Since beginning her treatment in November 2008, Smith has gotten rid of her constant sore throat and runny nose, blurred vision, pressure around her heart, and can once again eat a wide variety of foods and run her sign shop.

However, she still experiences joint pain and fatigue though not as intensely as in the past. She describes her treatment as a slow process of detoxifying her body, something similar to peeling away the layers of an onion. Her goal is to regain total health.

After the experience, Smith is hoping it won’t be long before the state makes extensive research about Lyme disease a serious priority.

For more information on Lyme disease prevention, log onto Make May the month you get educated.

Arm yourself with education

The Minnesota Lyme Action Support Group (MLASG), a fast-growing organization that supports people suffering from Lyme disease and other tick-borne illnesses, is preparing for May, Lyme Disease Awareness Month.

The group has scheduled its third annual 5k Lyme walk/run for 10 a.m. to 1 p.m. Saturday, May 16 at the Sunrise Prairie Trail in Wyoming, Minn. The walk raises money to fund the MLASG with its efforts for education and prevention involving Lyme disease and tick-borne illnesses.

During the second Tuesday of each month these individuals gather at Hosanna Lutheran Church, 9300 Scandia Trail N., Forest Lake, to discuss current issues, listen to speakers, plan education and tackle the obstacles of making Lyme disease and tick-borne illnesses a priority in Minnesota

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