From bite to diagnosis: Lyme disease is no laughing matter

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By Phyl Newbeck

One tiny little insect can cause a world of trouble. That’s why Shelburne Town Clerk Colleen Haag wants to educate people about the effects of Lyme disease. Haag’s faith in the medical profession has been tested by years of seeing doctor after doctor and getting test after test but not being properly diagnosed. “Some doctors will tell you Lyme disease doesn’t exist,” she said. “There isn’t a lot of knowledge or help for chronic Lyme patients. Most of us have been sent to psychiatrists.”

Haag had always been a healthy person but roughly 10 years ago she found a bull’s eye rash and sought medical assistance. “They said it was a spider bite,” she said. After an initial infection, the rash went away and although Haag developed some flu-like symptoms over the summer, she didn’t connect the two. A couple of years later, she began to develop vertigo and balance issues. As the years progressed, her symptoms began to include a dry cough, breathing difficulties, ringing in her ears, numbness and tingling, shooting pains, hearing problems, swollen knees, vision changes, fatigue, and seizure-like episodes.  She has finally found a “Lyme-literate” physician in southern Vermont who is treating her for the disease.

Haag worries that mild winters will make it easier for ticks to propagate. She is especially worried about children since she believes the antibiotics can’t be given to anyone under the age of eight. Haag suggests that anyone who finds a tick should immediately seek medical attention and have a doctor remove the insect. She further cautions that taking antibiotics may not be enough. “A lot of the ticks carry co-infections,” she said “so antibiotics alone won’t cure you.”

Sallie Mack, a homeopath based in Charlotte, isn’t a big fan of antibiotics. She had never taken any but when she discovered she had Lyme disease she didn’t hesitate to request them. “I think every tick bite needs to be treated,” she said “regardless of whether there is a bull’s eye rash or not.” Mack said only a third of those with Lyme disease will exhibit the rash. She counsels anyone who has been bitten by a tick to request a high dose of antibiotics which should cost roughly $25. She disagrees with the guidelines of the Infectious Disease Society of America which say no antibiotics are needed unless the tick has been embedded for 24 hours.

To prevent being bitten in the first place, Mack suggests wearing fully protective white clothing; white because the pencil-point size tick is more likely to be visible against that background. She cautions people to check their bodies from head to toe after being outside to make sure no tick has attached itself; ticks like warm parts of the human anatomy and are known to burrow in men’s scrotums and under women’s breasts. Mack also uses a solution of cedar oil in a corn solvent which can be sprayed on humans, animals, and plants. She said some people use a product called Tick Tubes which contains cotton treated with a substance fatal to ticks. White-footed mice, carriers of the tick which causes Lyme disease, take the cotton to their nests. The ticks are killed but the mice are unharmed.

Mack said physicians are generally afraid to prescribe long-term antibiotics to Lyme patients for fear of raising a red flag with insurance companies. She said that if not treated, Lyme can lie dormant for years. Mack also questioned the test currently used to determine if a person is infected. “It’s a 30-year-old test,” she said, noting that there are two labs based in California and Pennsylvania which perform different types of testing.  Unfortunately, the costs at those labs are $200 and $600 respectively so Vermont doctors do not recommend them. “It’s so political,” she said. “It reminds me of AIDS 30 years ago.”

The Vermont Department of Health has information on their website on tick identification and Lyme disease prevention. They recommend the use of repellents including those containing DEET for skin and Permethrin for clothing. They also recommend regular lawn mowing, brush clearing, and leaf litter removal, keeping the ground under bird feeders clean, stacking wood in dry areas, and placing wood chips or gravel between lawns and forested areas to prevent tick migration. They produce a brochure entitled “Be Tick Smart” which is also available as a wallet-sized card. State Epidemiologist Patsy Kelso said the state is in the process of putting together a website for people to report exposure to ticks. “The goal is to help increase awareness and prevention of Lyme disease,” she said “but the information provided will be crowd-sourced and will not be confirmed or authenticated.”

“Lyme disease is a life changer,” said Haag. “You need to be disciplined and make changes to your lifestyle and diet. I don’t want anybody to be as sick as I was.” Haag still suffers from debilitating fatigue and has had to cut back on civic commitments. She tells friends she can’t always make advance plans because she never knows how she will be feeling on a particular day. “I used to go at 350 miles per hour,” she said “and now I’m down to five.”

3 thoughts on “From bite to diagnosis: Lyme disease is no laughing matter

  1. Thank you for continuing to get the word out and public outreach !!! We all have to do our part and hopefully changes will be made in prevention, diagnosis and treatment !
    BE TICK SAFE
    Pam Griffin-Tierney
    I have been doing a Lyme series on the Underhil Front Porch Forum ( also read by Jericho, Cambridge & Westford)
    I think it is a good venue to get the word out . Just an idea. : )

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