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Friday, December 30, 2005

'I wanted to talk about dying'

Osseo-Maple Grove Press
Last February, Maple Grove resident Sue Nelson felt she had hit rock bottom.

She was in constant pain that worsened daily and had been to every doctor and specialist she thought was possible, incurring above $300,000 in medical expenses.

"I laid in bed thinking 'this is it'. I couldn't do anything. I couldn't walk, sleep or function in daily life. There were no more doctors. No more tests. I wanted to talk about dying. I thought that is where the pain would lead me," Nelson said.

After all the doctors and multitude of tests, Nelson was left with no diagnosis and a life of consent pain.

"I wanted to talk about dying. I wanted to make peace with myself and make preparations. My mom was the first one willing to talk about my wishes and it was like admitting I was going to die," said Nelson. "I prayed I would die quickly or receive an answer as to why I was so sick. During our conversation, out of the blue, my mom mentioned Lyme disease."

Little would Nelson realize, the conversation about the possible end of her life would lead her to the discovery that would allow her to live her life again.

Nelson was diagnosed with Lyme and Bartonella disease in March 2005. The diagnosis and treatment, she explained with a smile, is letting her live her life again.

Although Nelson cannot determine the date she contracted the diseases, she started developing symptoms in August 2004. She did not experience the classic "bulls eye rash" associated with Lyme disease, which may have led to an earlier diagnosis. Symptoms began in the form of the feeling of pins and needles in her feet. "It was unusual, but nothing other than a minor annoyance," said Nelson. "I knew something was wrong, but it wasn't anything I felt I should see a doctor about."

In November 2004, existing symptoms had worsened, spreading through her body and additional symptoms appeared. Nelson decided it was time to visit a doctor when she could no longer sleep at night due to a resting heartbeat of 90-120 beats per minute. According to the American Heart Association, the average individual has a resting heart rate of 60 to 80 beats per minute. She was placed on high blood pressure medication, but symptoms continued to worsen and new symptoms continued to appear.

"I started having a consent buzzing feeling in my body," explained Nelson. "Eventually, I had fainting episodes, mini seizures and convulsions."

In addition to a general practitioner, Nelson visited a stream of specialists ranging from cardiologists to infectious disease specialists and had a multitude of tests performed. Nelson indicated that a test was completed for Lyme disease, but it had provided a false negative.

During one of her many clinic visits, Nelson was advised her problems stemmed from depression due to her age and circumstances.

"I was insulted, but I went along with the antidepressants with the hopes it would cure me. Everything continued to get worse," said Nelson. "I was so scared. By the time I had scheduled the multiple appointments and tests, I was numb up my left foot to my ankle. My right foot and right hand were numb along with the right side of my face. The usual sensations I had felt with my hand were gone. If I tried to pet the dog, I couldn't feel anything."

According to the Lyme Disease Foundation, Lyme disease symptoms can often imitate other diseases and can be misdiagnosed. Some individuals do not notice the early indicators of the disease, such as flu-like feelings of headache, stiff neck, fever, muscle aches, fatigue and a possible rash from the bite. Once early indicators of the infection disappear, the disease can disseminate to other organs. The LDF indicates Lyme disease can adversely affect many portions of the body, such as the brain, eyes, skin, heart, joints, liver, lungs, muscles, digestive system and spleen and can affect pregnancy.

As time progressed, Nelson made repeated visits to the emergency room. Her ability to walk was gone. She no longer could complete simple, daily functions such as changing her clothes, bathing or brushing her teeth. Husband, Mike, and daughter, Madelyn, assumed the role as her caregiver. Since she is self-employed, she was did not receive disability benefits and was unable to continue working.

Then Nelson found her answer.

As she discussed her illness and what appeared to be a fatal outcome with her mother on the cold winter day, her mother mentioned Lyme disease and its symptoms. The discussion lead to research on the Internet and the shocking discovery that a majority of the symptoms Nelson was experiencing were also found in Lyme disease patients.

"I couldn't find any Lyme disease doctors in Minnesota or Wisconsin to confirm what I felt was wrong with me," explained Nelson. A specialist was located in Missouri and Nelson, accompanied by her husband, set an appointment.

"At that point, I had to ride in a wheelchair and be carried by Mike. I could barely handle the plane ride due to the pain," said Nelson.

Once at the Missouri clinic, a Western Blot test was done and sent to the Center for Disease Control lab and a Lyme lab, IgeneX Inc., in Texas. Nelson had been advised that it was the most clinically accepted test available. The test came back positive and Nelson began antibiotic treatment immediately. Her doctor also diagnosed her with Bartonella based on clinical observation, which involved a review of pictures and Nelson's recounting of an episode of being bit by sand flies in March 2004 while vacationing in the Caribbean.

Nine months after the diagnosis of Lyme and Bartonella, Nelson continues to improve. She has resumed her business and continues to strive toward a complete recovery while dealing with lingering systems such as cold hands and feet, ringing in the ears and tiring more easily.

Although she is significantly improved, Nelson still requires ongoing medical treatment.

"I need to take several types of antibiotics to ensure that I totally wipe out all forms of the Lyme bacteria in my system. I also take a lot of supplements aimed at fighting Lyme disease," said Nelson.

According to Nelson, she also took an antibiotic called Rifampin that was used specifically to treat Bartonella. "How one responds to an antibiotic is also an excellent indicator of which type of diseases one has," said Nelson.

Along with the ongoing antibiotic treatment, she continues to have a phone consultation with her Lyme doctor every four to six months and yearly visits. She also continues to have regular lab work done at a local clinic, which is faxed to the Missouri physician, to ensure there are no negative side effects from the long-term antibiotic usage.

Upon looking back, Nelson feels that the diseases have changed her life.

"Mike, Madelyn and my mom came through for me and they proved to be my saviors. I was also very surprised at other family members and friends who were there for me and so wonderful. I now personally have much more awareness of others around me who have special needs," said Nelson. "I feel less concerned about the day-to-day stuff and know that it will all work out. I try to remember on a daily basis how far I have come and how lucky I am to be walking around and just doing the small stuff."

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