Group battles Lyme with information, support

BY REGGE EPISALE

Colleen Schake often has trouble driving at night due to both pain and the effects of Lyme disease on her vision. Light glare and the resulting severe headaches make driving both difficult and dangerous.

Schake and Phyllis Konstas, who has a close family member with Lyme disease, were attending the Southern Tier Lyme Support Group in Kirkwood, N.Y., when they discovered even a trip to Kirkwood was too long when disease symptoms were acute.

Firmly convinced there were others in the area in need of a support group, with the organizational help of Colleen Houck, who founded the Kirkwood-based group, and space donated by Jennifer Button-Weller, Chiropractor, the two women started the Montrose Lyme Support Group in May.

Only four people attended the first meeting. By November, there were 25 attendees.

Houck said she expects those numbers to increase as more people find out about the support group. The Southern Tier Lyme Support Group, which started small, Houck said, now has over 100 members.

The Montrose Lyme Support Group manages a public Facebook page, Lyme Scout Montrose PA Area, where they share links to research sites and information as it becomes available.

A private web page is kept for those who need a place to discuss their disease in a protected setting.
The group’s purpose is to share research and new information, as well as provide a group who understands the burden Lyme disease presents. Meetings are held the first Monday of each month at 6 p.m. at Button-Weller Chiropractic DC PC, 11322 State Route 29, Montrose, PA 18801.

Although early detection and treatment is essential for those with Lyme disease, it is hard to diagnose. Symptoms vary from person to person.

According to The International Lyme and Associated Diseases Society (ILADS), “Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system, and could be hard to cure.”

Some possible symptoms they list are: rash (not just the famous bull’s-eye), Bell’s palsy, arthritis, meningitis, fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling.

Symptoms may be different in children. Few children exhibit the bull’s-eye rash. They often have a flu-like illness during the summer months and may sleep for a day or more. They often complain that light hurts their eyes. Stomach problems are common. They may not want to participate in physical activity and may development cognitive problems such as learning disabilities or behavior problems according to information published by Douglas W. Fearn in “Lyme Disease and associated diseases: The Basics,” from the Lyme Disease Association of Southeastern Pennsylvania.

There is no reliable test for Lyme disease. “Some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results, according to ILADS.”

Dr. Clarence Mast, of Meshoppen, has been treating Lyme disease patients for over 10 years. He said that even if someone has a negative Lyme test, they may have one of the many other co-infections or associated diseases such as babesiosis (a blood parasite and not a bacteria), anaplasmosis, ehrlichiosis, bartenella, and Rocky Mountain spotted fever, to name a few.

He now treats over 40 individuals a month for tick borne diseases and believes this is partly due to a more informed population and credits information technology, which he says has been “very helpful.”

Dr. Mast says the most important thing anyone can do is actively try to prevent tick bites.

Permethrin is an insect repellent that can be purchased to spray clothing. Once dry it is non-toxic and will actually kill ticks that get on clothes. If camping or hiking it can be sprayed on tents, gear, even bedding, and will remain effective through as many as six washings.

Rose Geranium oil can be applied to skin. It doesn’t kill ticks but they don’t like it and are less likely to bite. This is especially important in the summer months when wearing shorts and short sleeves.
It must be reapplied every four hours to be effective.

Dr. Mast stresses that pets, although protected with collars and medicine, can still carry ticks into the house in their fur. Children, especially those who sleep with pets, are then susceptible to being bitten.

Dr. Mast said there is no specific protocol for treating Lyme disease, as each person is affected differently.

If a person knows they are have been bitten by a tick, they can put the removed tick in a plastic baggy with a wet cotton ball to keep it from drying out and send it to a medical lab for testing to see if the person has been exposed to any of the tick borne diseases.

Pennsylvania, Senate Bill No. 177, The Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act, states:

“In 2009 and 2011, this Commonwealth ranked highest in the country in the number of confirmed cases of Lyme disease. From 2002 through 2011, this Commonwealth has reported a total 42,032 confirmed cases of Lyme disease.”

With the act, Pennsylvania established a task force to include the Department of Health, Department of Conservation and Natural Resources, and the Pennsylvania Game Commission to execute surveillance, prevention and education strategies.

In October of 2015, the Susquehanna County Commissioners formed the Susquehanna County Tick Borne Disease Initiate to educate the public on types of ticks, tick-borne pathogens, how diseases are transmitted, precautions, removal of ticks and testing, early diagnosis, treatment and monitoring, and to establish a communication stream.

Anyone who is interested in joining the Montrose Lyme Support Group or getting more information can go to Lyme Scout Montrose PA Area on Facebook or email the group at montroselymegroup@gmail.com.

1 Comment on "Group battles Lyme with information, support"

  1. Colleen Schake | October 14, 2016 at 9:53 am | Reply

    Corrections were made to this article. Symptoms of Colleen Schake were not hers alone but a combination of others also interviewed.

Leave a comment

Your email address will not be published.


*