In October 2009, Paula Jackson Jones of Nobleboro was bitten by a tick and found it on her side after a day of clearing brush at her house. She removed the tick and did not think much more about it.

Within a week, she began to have trouble sleeping, was anxious, and felt very tired.

By the second week, Jackson Jones said, she was having a hard time focusing at her job. Eventually, she went to the doctor and was told it could be anxiety and stress. After that, she started experiencing a stiff neck, headaches and her heart would race.

"It gradually got worse, and at that point I was diagnosed with panic attacks," she said.

Fast-forward 18 months and 24 doctors, to when Jackson Jones was diagnosed with neuro-borreliosis, which is neurological Lyme disease, plus Bartonella, Babesia, Ehrlichiosis and Rocky Mountain spotted fever.

After spending three and a half years in treatment, Jackson Jones has been in remission for the last three years, but her experience led to the creation of Midcoast Lyme Disease Support & Education, a nonprofit she started in 2014 with Angele Rice of Bath, another survivor of tick-borne co-infections.

With the tick population not dying off in the winter as it did in the past and the incidence of tick-borne diseases on the rise, MLDSE is traveling the state giving prevention talks and urging people to protect themselves, their pets, homes and yards.

"We are an accidental host. We were never meant to be part of the food chain, but if the ticks are here and their food sources have been eliminated or reduced, they are going to look to us for their next meal," Jackson Jones said.

Since the state has limited resources to dedicate to educating the public about the dangers of tick-borne illness, much of the responsibility is pushed back on individuals and groups such as MLDSE to spread awareness about prevention and treatment options.

In 2016, there were 1,439 confirmed and probable cases of Lyme disease reported in Maine, and of those, 33 percent of reported cases were from southern Maine and 23 percent were from the Midcoast — Knox, Lincoln, Sagadahoc and Waldo counties. However, the federal CDC estimates that number could be as much as 10 times higher because of the way the data is reported.

The most common tick-borne diseases reported in Maine are: Borrelia Burgdorferi (Lyme disease), babesiosis, ehrlichiosis, bartonellosis and Rocky Mountain spotted fever.

This spring, two Midcoast adults also tested positive for Powassan encephalitis, which is considered rare in the United States. Only nine Mainers have been diagnosed with the illness since 2000. One of those cases was South Thomaston resident Lyn Snow, who died in 2014 from the virus.

And Jackson Jones said it is not just deer ticks that transmit disease, as is commonly thought — all ticks can..

Ticks are not dying off in the winter, which is one of the reasons for the increase in their population.

"Our winters in Maine, as harsh as they can be, don't last forever," Jackson Jones said. It is not staying cold enough for a long enough period of time, so the ticks are hibernating, rather than dying, as they once did, she said.

The reason for the increase in babesiosis, which is a malaria-based tick-borne disease, is that if a female tick is infected with Babesia and lays 3,000 eggs, every egg is going to be infected. So far, scientists have not proven this in other tick-borne diseases, she said. In addition, scientists have discovered ticks have an enzyme protein in their body similar to anti-freeze and that may be why they are able to survive the winter months.

"I think the level of ticks have gotten so high that the only thing we can do is personal prevention," Jackson Jones said. "There isn't one particular thing that we can put out there that will eradicate the tick problem, unfortunately."

Chickens, mice, opossums and guinea hens will peck at ticks here and there, but ticks are not a main source of food for the animals, so while they will help to cut down the number of ticks, it's not realistic to think they can remove the tick population, she said.

"Even when Florida decided to spray against Zika to keep the mosquito population down, it failed," she said. "There was a sort of a reduction, and then the next thing you know, they are back again. It didn't really work."

Jackson Jones said as she and Rice give their talks, they often hear people say they are afraid to go outside.

"Maine is a state where we are meant to live outdoors; we are meant to do things outdoors," she said. "One of the reasons we do go around and give our talk is we believe knowledge is power and if you educate somebody about what they can do and take control of the situation, it kind of lessens the fear."

The five points of prevention

Jackson Jones said when she encounters someone who says they got a tick on them and asks what to do, her first question is always whether they were wearing repellent or sprayed their clothing with protectant. Nine out of 10 times, she said, people say they have not.

"It's like going to the beach without sunblock and thinking 'I'm not going to get a sunburn,'" she said. "Even if you do repellent, it's not a guarantee you aren't going to get one on you, but it will lower your risk."

Jackson Jones said a lot of information on prevention is outdated, such as tucking your pants into your socks and wearing light-colored clothing.

"That is not prevention, that is trying to make it so the tick can't get to your skin, and if you wear light clothing, so you can see them. But there is nothing on your skin that screams 'get away from me!'" she said.

Repellent of your choice should be used on the skin, whether it be something with DEET, or something more natural like essential oils or picardin. Jackson Jones said the Center for Disease Control has done studies that show essential oils and picardin are just as effective as the chemical DEET, but are safer, especially for children.

"We know that disease can transmit in as early as 15 minutes if they are transmitting Powassan, or transmitting in 30 minutes for anaplasmosis," she said, noting some outdated information says ticks must be attached for 24 to 48 hours to spread disease.

Science has shown that disease is transmitted while ticks are feeding and they begin feeding as soon as they attach to the skin, so if the tick is just crawling around and has not embedded itself, it is not feeding and not transmitting any bacteria.

For treating clothing, Jackson Jones recommends treating all clothing with a product called permethrin, which contains a chemical derived from the chrysanthemum plant that is toxic to ticks. It is a spray or aerosol that, when put on clothing, can last for between seven and 10 washes. There are services available for people who work outside to send their clothes away to have a heavier concentration applied to them.

The clothes are sprayed, not saturated, and then left to air dry. Keep the clothing away from pets and children while it is drying, but once it's dry, it bonds with fabric and is safe. Gardening gloves and clothes, shoes, baseball hats, all can be sprayed with permethrin, because it will bond to any type of fabric, leather or plastic. DEET does not bond with the clothes and has been known to destroy or "eat" certain fabrics.

For treating pets, Jackson Jones recommends talking to your veterinarian for suggestions, because depending on your pet's age and weight, the vet may recommend various orals, topicals, or collars.

'There is no one-size-fits-all approach to animals, and just because you can walk into a store and buy it doesn't mean it is safe for your pets," she said. "Have a conversation with your vet. The vet is going to know the health history of your dog, and going to know if they have any allergic reactions."

Inside the home, Jackson Jones recommends cleaning with products that have natural repellents, such as lemongrass, rosemary and eucalyptus essential oils. Many products on the market today, like shampoos, body wash and cleaning products, have those oils already in them and will act as a repellent as you clean your house. For pet beds, Jackson Jones recommends spraying with permethrin and allowing it to air dry.

For treating yards, there are many do-it-yourself methods on the market, as well as professionals who offer the service. Jackson Jones said her husband treats their yard twice a year — in the spring and again Labor Day weekend. She said professionals typically do three or four applications.

For those choosing to hire someone, Jackson Jones recommends using a company licensed by the state of Maine. The companies offer both chemical and organic options and will take many factors into consideration: do you have children and pets? Do you live near the ocean or a watershed?

"If your yard is treated, your home is treated, if your pets are treated and if you've treated your clothing and you have put some repellent on your skin, you've made it really hard for a tick to want to stick around," Jackson Jones said.

Coming in contact with ticks

If you do get bitten by a tick and it is embedded in your skin, do not aggravate it by poking it, burning it, or pouring something on it.

"If you put something on a tick and aggravate him, the first thing that tick is going to do without you realizing it, is it regurgitates everything in its stomach into your body. So you just guaranteed exposure," Jackson Jones said.

She said the safest method is to use a tick remover spoon or key, or tweezers, and grasping it underneath the mouthpiece, lift upward.

The majority of primary care doctors are not going to treat or do anything unless a person has symptoms, and some doctors will only prescribe one or two doses of doxycycline, but Jackson Jones said this does not properly fight off any potential spread of infection. She urges patients to demand a full 21-day treatment of doxycycline and if their primary care doctor refuses, MLDSE can recommend doctors who will prescribe that dose. There are also natural products that can be prescribed for children, as some doctors do not like to prescribe doxcycline to children. The bulls-eye rash, which is a telltale sign of infection, only appears in about half of cases.

MLDSE provides resources to people living with Lyme disease or those who suspect they may have it or other tick-borne illnesses.

"We aren't doctors, but at the same time we know doctors who will help," Jackson Jones said, noting the group is a bridge to connect people to the resources they need.

The group also advocates for chronic Lyme disease acknowledgement, diagnostic and treatment changes at the local and state levels and in 2015 was asked to join the Maine Center for Disease Control vector-borne work group to provide a voice from the people.

To find out more about MLDSE, log onto

Courier Publications Editor Kim Lincoln can be reached at 236-8511 or by email at