“Knowledge is power, on so many levels.”
Last month, my 15-year-old son had to go through the ordeal of having another I.V. treatment line put in. This time, it really was an ordeal, an assault to an already embattled body that is trying to say, “I’ve had enough!”
Who would have envisioned this long, grueling journey that Cort has traveled, all because he played pitch and catch one day in a seemingly safe wooded area. One single tick made that fun summer day in 1998 a turning point in his life.
Again, he is receiving daily I.V. treatments here at home for chronic Lyme disease. He is knowledgeable beyond his years on how this disease wracks a once-healthy body. Unable to go to school, he has had to learn to motivate himself through pain and fatigue in order to teach himself through computer classes and tests.
Too often misdiagnosed. I had written Cort’s story in the Farm and Dairy, and earlier this summer received a letter from an aide caring for a woman here in Ohio. Her story sounded so similar to Cort’s, and she wondered what I thought she should do. Her patient is being treated for multiple sclerosis, in spite of negative MS tests, and even though her cascading health problems came several years ago after being bitten by a tick while at a festival.
I wrote back, urging her to consider getting this 49-year-old woman to a doctor who recognizes and treats Lyme disease.
If we have learned nothing else throughout this four-year battle, it is the difficulty in getting a proper diagnosis and treatment.
Lyme disease is called the great imitator. Symptoms can mimic MS, ALS, rheumatoid arthritis, Parkinson’s, even Alzheimer’s: numbness, tingling, confusion, tremors, pain, body weakness, fatigue, dizziness, depression.
Sadly, undiagnosed patients have been sent to psychiatric institutions when the spirochete bacteria invade the central nervous system and the brain. There are people suffering with Lyme disease who have become paralyzed, blinded, robbed of a life worth living.
Because testing for Lyme is highly inaccurate, especially as the disease becomes entrenched in the ailing body, many are never diagnosed. The spirochete bacteria hides in deep tissues, making blood testing practically worthless in some people.
We spent literally thousands of dollars in testing before one positive finally came up. Even though we knew our son had been bitten by a tick and became sick in the months following, we could not get diagnosis or treatment because he tested negative for Lyme initially.
Our silver lining came via a phone call one day recently. The sweet home-care worker who had written to me after my initial column called to tell me my son’s ordeal changed one woman’s life. They went to the doctor I had recommended, and this legally blind, wheelchair-bound woman had been tested for Lyme. It came back positive. High doses of antibiotics have been started, and that day she had been able to sit up on her own for the first time in a very, very long time.
It will be a long road back. But being on the right path with the proper diagnosis seems to be half of this horrid battle.
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Editor’s note: Dear friends, I know many long-time readers have followed the ups and downs of the Sutherland family for many years, through Caroline’s illness, a devastating house fire, and now, through Cort’s battle against Lyme disease. The Sutherlands are part of our family – the Farm and Dairy family – and I think they could use our help. Please join me in sending a note or a card of well wishes. Cort Sutherland’s 16th birthday will be Oct. 23, and if we can’t give him health, we can at least give him our thoughts and love with a card.
You can write to the Sutherland family at: 1745 C.R. 995, Route 6, Ashland, OH 44805.
– Susan Crowell