Sufferers describe the terrifying fog of tick-borne illness

Many say they were ashamed of their anxiety and depression before they joined support group

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  • Dr. Robert Ollar (Photo by Frances Ruth Harris)

  • Mikki Weiss (Photo by Frances Ruth Harris)

  • The group listened intently as TBD sufferers shared their stories (Photo by Frances Ruth Harris)

A nurse said she went from being able to do complex calculations in her head, like the drip rates for micrograms per kilogram per minute, to not being able even to count money.

By Frances Ruth Harris

— "It's almost like I've been bitten by a vampire," said one woman of her tick-borne illness.

She was one of five members of Pike County's Tick-Borne (TBD) Support Network, who spoke to local residents at a meeting in Milford on May 12. The speakers wish to remain anonymous. Another woman said she's had Lyme disease for almost 20 years, then contracted Babesiosis from a tick bite four years ago. She is a registered nurse who worked in the critical care environment of a burn unit and in pediatric ICU.

She said she went from being able to do complex calculations in her head, like the drip rates for micrograms per kilogram per minute, to not being able even to count money. Her tick-borne illnesses made her unable to write a simple doctor's order.

She experienced periods of profound fog, when simple tasks took forever, causing her major anxiety and stress. She said she didn't want others to know about her periods of depression and anxiety. Sometimes, she can't remember even the most basic information. she surprises herself when she can remember.

She said she would not want who she has become taking care of anyone. She can't trust herself to do procedures correctly consistently, especially where medication is concerned.

Each day is different, she said, with some good days and some days that are a battle at every turn. She never knows how she will feel.

She said she's lucky because her husband also has a TBD and understands the horror of the illness. She said the TBD support group is very positive, and she's grateful for its founder, Mikki Weiss, and her friends in the group. Now she knows she's not alone, not crazy, and that it's okay to ask for help.

Another sufferer said he's learned coping mechanism, like how to eat a healthy diet and exercise, which have helped. He couldn't work for a time. He was dizzy, experienced shortness of breath, had flu symptoms and trouble walking. Later, he couldn't sleep well, with pain from head to toe.

He said Lyme disease mimics many other illnesses, and is an emotional and financial burden besides. He said he's now working full time again.

One woman said she likes the support group's updates on the latest information about TBD issues, and what other people are doing to battle them.

Another said every little bit helps when you are suffering memory loss and can't do your job any more.

One woman has serious problems with sight: her depth perception has been affected, and one of her eyes is turning inward. She noted it's possible to get tick-borne diseases more than once.

She said she felt like she was half the person she used to be.

Until support group members understood tick-borne diseases better, many felt shame. They did not know or understand what had happened to their bodies. Now, Weiss tells them, "You have to be your own advocate."

A failure to actPike County Commissioner Matt Osterberg kicked off the group's learning and sharing event held at the Pike County Library. The Pennsylvania Department of Health and the state legislature have failed to act. He condemned the legislature for failing to approve a $2.5 million request from Governor Wolf to fund research into tick-borne diseases.

Osterberg said the county task force has been working to provide information and guidelines for schools when students are bitten on school property. Osterberg also wants Dr. Robert Ollar, Ph.D., Assistant Professor of Neurology at New York Medical College and consulting microbiologist for the TBD Support Network, to create an electronic journal to inform doctors about new developments in tick-borne diseases.

Osterberg said the Pike County Bar Association funded part 1 of the Milford Borough Scan, which tested for the TBDs Bartonella, Babesia and Borella in Milford Borough. Part 2 will cover the remaining diseases, including Powassan Virus and Borrela, Miyamotoi. All townships in Pike County will be scanned by the early fall, with data made available to local physicians and the state health department, he said.

Weiss, CEO, president and founder of the TBD Support Network, presented the three B's, urged Pike residents to protect themselves from tick bites by spraying their garments with Permone (Permithrin) and their skin with Deet or equivalent anti-tick spray.

She stressed repeatedly there is no "tick season." Tick season is all year — anyone may be bitten by a tick at any time of the year.

Anyone with a tick-borne disease may join the TBD support group. Just call 570-503-6334, or visit the TBD Support Network's Facebook page.

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