By: The Mohawk Valley Lyme Disease Support Group
We here in the Mohawk Valley live in a Lyme disease endemic area. This means that a significant number of ticks found locally are infected with the borrelia spirochete bacteria. As if that wasn’t bad enough, many in our medical community are not well educated on TBD (Tick Borne Diseases). This is why it is so important to research and become your own advocate.Local Veterinarians report hundreds of cases of ticks while only 40 human cases were recently reported by the Oneida County Health Department. NY State uses a formula to estimate human cases rather than investigate each one in highly endemic counties, each case is not counted.
Testing for Lyme in humans is not highly accurate. Approximately 50% of people display a rash and even with that, many have not been promptly treated for Lyme. This can lead to a number of ongoing health problems. Most doctors will say “hard to catch, easy to treat” but if not caught early Lyme Disease can advance to cause a lifetime of health issues.Unfortunately, Lyme has become a highly politicized disease with two different sets of guidelines, namely, Infectious Diseases Society of America (IDSA) and International Lyme and Associated Diseases Society (ILADS). For reasons too complicated to explain here, the Center for Disease Control (CDC) has only used IDSA guidelines. They are outdated and have been removed from the DHHS National Guideline Clearinghouse site.
ILADS guidelines are more recent, are Institute of Medicine approved and are on the government site but not promoted. The CDC admits actual cases of Lyme are under reported by at least a factor of 10, that testing was for surveillance purposes, not for diagnosis.
Diagnosis is to be made based on symptoms and possible exposure to ticks in an endemic area. That is not what is happening in the mainstream medical community.
Deer Ticks that carry Lyme and other TBD, become active anytime the weather is above freezing. Warmer weather brings out active adult females eager for a blood meal needed to lay eggs.Adult females are the size of a sesame seed. They like to hang out on tips of grass to latch on to an animal or human walking by. Each stage of development from larva to nymph to adult needs a blood meal to mature.
Nymphs become a problem later in spring. They are the size of a poppy seed. Usually they reside in leaf litter and other debris on the ground. Nymphs can also be in woodpiles, stone walls and compost. They crawl upward and like to hide in armpits, groin, navel, scalp and ears although they can attach anywhere. This is why tick checks after being outdoors are so important.
Prevention of tick bites is the only guarantee against disease. If the tick is found quickly and removed properly there is less chance of infection but there are more diseases being found in ticks that can be passed on quickly. Awareness and prevention is key, even in your own backyard. There is no hard and fast tick attachment rule.
There are many web sites that can instruct on how to keep ticks out of your yard. There are many references to effective tick repellents, some chemical, some natural. Coming indoors and putting clothes in the dryer on high for 10-15 minutes and taking a shower can help prevent tick attachment. Just washing clothes will not kill a tick, they like moisture but will dry out with heat.
Mohawk Valley Lyme Support Group was founded by people affected by Late Stage Lyme Disease, meaning it was not caught early or properly treated. We have experienced the difficulties involved in obtaining proper diagnosis and treatment for our puzzling multi system health issues. Our goal is to provide support, resources and awareness to the local community to help them help themselves with this complicated health issue.
This is not an attempt to frighten people into staying indoors but to help them keep from contracting a highly misunderstood disease. We hold monthly meetings, usually the third Sunday of each month, 2-4 pm at the Unitarian Universalist Church of Utica, 10 Higby Road.
MVLSG has a website: https://www.mohawkvalleylymesupportgroup.com/ and we are also on Facebook where much current information is posted. Meeting information and special events also posted there.
Questions will be answered, best by email, either MVLymeSG@gmail.com or mvlymegroup@yahoo.com Having support when struggling with what can become a very complex disease is essential. Becoming your own advocate is also a big part in recovery. We help provide the information necessary for you to help yourself or a loved one.
