April 30, 2009 at 8:11 a.m.
Locals impacted by Lyme disease take active role
Locals impacted by Lyme disease take active role
Imagine waking up one morning after visiting neurologists, rheumatologists, hematologists, infectious disease specialists, and a gastronomotrist, and no one can tell you exactly why you feel bad. Your symptoms continue to worsen. Your foot has become lame. You have a loss in wages drop. Still, there is no reasonable diagnosis. You undergo a hip biopsy, a fat aspirations test, three MRIs, a cat 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.
As Minnesotans we live in a high-risk area for Lyme disease, a bacterial infection most commonly contracted from a tick bite which initially may cause flu-like symptoms. It seems the people we trust with our healthcare would be able to diagnose this disease easily, However, for many, that is not the case.
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 doctor did what most do, prescribed the antibiotic Doxicycline. Unfortunately for Smith, the medication made her sick and she was unable to complete treatment. At that time, she says her doctor told her that she "probably didn't have Lyme disease anyway." Smith had no reason to question that advice.
Experiencing random rashes and constant 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 were constantly swollen. She also had an increase of complications with her cognitives. It was at this time that the first of several Eliza tests was administered. The test, which is 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 problems.
In August 2007 Smith's illness resulted in her left leg experiencing what she described as a "foot drop". She was hospitalized and began a long and frustrating process of seeking answers from top medical facilities in Minnesota. With misdiagnoses 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 reviewing reams of information, a call to a complete stranger was the 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. Smith said, "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."
The Minnesota Lyme Action Support Group (MLASG) was founded by Anne Myre in April 2006. It began with 15 members. Currently, with 289 members, it is a fast-growing organization which supports individuals suffering from Lyme disease, which is one of the fastest-spreading infectious diseases in the United States. The organization strives to raise awareness educating the public about Lyme disease and other tick-borne illnesses, and prevention.
Each day more Minnesotans search for answers to their questions and hope for their battle with Lyme disease. Some have been misdiagnosed with diseases such as Fibromyalgia, Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), Chronic Fatigue Syndrome, or Alzheimers. Some have family members or friends suffering from a tick-borne illness.
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 our state. From job loss, paralysis, doctor misdiagnosis, and treatment denial everyone in the room has an unbelievable story. Some are at a stage of wonderment asking, "Why me?", and trying desperately to figure out what to do next. Other members of the group 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 for this test is usually out of pocket, and an insurance company may or may not reimburse you. Once the test is administered it is sent to California to a lab that specializes in Lyme disease, and the test results are given to your doctor. Results cannot be sent directly to the patient. It took more than three weeks to get the results. When Smith finally got her results, as she and her husband had suspected for years, she had Lyme disease.
With a loss of faith in the doctors she has encountered, Smith said he took her IgeneX test results to Sartell, to 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 operate 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 layers. Her goal is to regain total health. After the experience Smith has had she is hoping it won't be long before our state makes extensive research about Lyme disease a serious priority. Everyone is potentially at risk for Lyme disease. If you are five minutes down the road or five states away, the Minnesota Lyme Action Support Group has information you need. Make May the month you get educated.
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