ROCKLAND — Maine is experiencing an unprecedented surge in ticks this year. The Maine Center for Disease Control and Prevention reported 1,464 cases of Lyme cases in 2016 and recently confirmed that two Midcoast residents were diagnosed with the rare Powassan Encephalitis, also known as deer tick virus.
One woman has a message for us all: Do not underestimate what one little tick bite can do to you.
Angelica Gaudreau, a massage therapist in Rockland, was in peak shape of her life, when a pink circle, the size of a nickel showed up on her leg in Summer 2013.
From there, a nightmare journey was about to begin, although she didn’t know it at the time. Like so many diagnosed with tick-borne Lyme disease, Gaudreau had no idea what was happening to her body in that first few months; nor did she have any knowledge that she’d even been bitten by a tick.
“A couple of months later, I began getting flu-like symptoms,” she said. “And then it would go away after a few days. I kept thinking, the kids are young and in school, and I’m just picking this up from them.”
A few months after that, she made an appointment with her primary care physician, who suggested Gaudreau’s symptoms could be due to malaria, but since she had not traveled to any place where she could have contracted malaria, Gaudreau dismissed the suggestion.
Her symptoms started to accumulate with headaches, migrating joint pain, migrating body aches, blurred vision, eye floaters, brain fog, weakness, sweats, light sensitivity, swollen lymph nodes, insomnia, severe bouts of dizziness and fatigue. Gaudreau had a hunch her symptoms could be the cause of a tick-borne illness, so she suggested to her doctor that she might have Lyme Disease.
“Despite the fact that I reminded my doctor that all of my symptoms started with recurring flu-like symptoms, I got brushed off with the suggestion that I was in my 40s, so this could just be hormonal,” she said. “After that, I was referred to a neurologist.”
After being bounced around from specialist to specialist with no real diagnosis, Gaudreau said: “I thought if this is going to like this for the rest of my life, I don’t know if I can manage. I was so dizzy at one point, I was afraid to drive. I was getting neurological symptoms and extreme panic attacks. The feeling was like being chased by a lion and I was just going to die. Normal things like someone slamming on the brakes in front of you while driving can shake you up for a few minutes, but it would shake me up for hours or days. I remember thinking that something was taking control of my thoughts. There was a consciousness that ‘this isn’t me.’ Something was happening to me that was physiological, not emotional.”
Once again, Gaudreau insisted to her physician she get tested for Lyme.
“I said to her, ‘if this test comes back as a negative, what do we do then?’ And she said to me, ‘if the test is negative, it’s negative. You don’t have Lyme disease.’’”
The standard Lyme disease test came back negative.
Fed up with the lack of knowledge and support from her primary care physician, Gaudreau decided to take matters into her own hands and pursued the naturopath route.
“The more I researched this topic, the more I learned how high the false-negative rate of this test was. So, I worked with a naturopath in Damariscotta to take an iGeneX test from a licensed laboratory, which came back positive for chronic Lyme disease.”
Tick prevention and removal tips
“There are more than 80 types of ticks in the U.S. and 14 in Maine,” said Angelica Gaudreau. “Put on some kind of tick repellent every day and check your body every day, especially under the armpits, groin and under the hairline. Check your kids and your pets every day. They can be as small as a pinhead, particularly the deer nymph ticks, so take a shower every night and throw your clothes in the dryer to kill any ticks that might be riding on your clothes.”
Many stores now carry both traditional brands of tick repellents with DEET as well as those made from all-natural ingredients. You can even make up your own batch with essential oils found at a natural food store or co-op.
If a tick burrows into the skin, there are several ways to safely extract it. Beyond everyday tweezers, tick spoons and tick twisters can slide beneath the tick and the skin and will pull the entire body out. These can be found in veterinary offices, animal rescue organizations, EBS, Rankins, Rite Aid, Reny’s and Wal-Mart.
Household lore might recommend dousing the tick in liquid soap or kerosene, but Snopes, the authority on urban legends strongly discourages this as “it will make matters worse by stimulating the creatures to release additional saliva or regurgitate their gut contents, acts that increase the chance of their transmitting pathogens to their hosts.”
The CDC website states “In most cases, the tick must be attached for 36 to 48 hours or more before the Lyme disease bacterium can be transmitted.”
If a tick cannot be entirely detached from the skin, Gaudreau advises to save the in a plastic baggie and immediately send it away for testing at Tick Report, iGeneX, or this free tick testing site.. Tick report sends results back via email within a few days.
A common remedy for an embedded tick that is not safely removed is to insist that your doctor prescribe two pills of doxycycline, which have been proven to ward off Lyme Disease within three days of a bite.
“Some people get several ticks attached each season, which is one of the reasons doctors don’t want to prescribe antibiotics without a positive tick test,” Gaudreau said. “I also don’t want to make it sound like the antibiotic treatment is my only recommendation because even a small dose of unnecessary antibiotics can be detrimental to your gut microbiome, which, in turn, will weaken your immune system.”
In her experience, she recommends using the homeopathic remedy Ledum palustre following a tick bite.
“In his book, Healing Lyme, Stephen Buhner recommends applying an Andrographis tincture and covering with bentonite clay to the site of the bite. He also recommends taking 3,000 mg of Astragalus daily throughout tick season,” she said.
If the tick test comes back positive for Lyme, this is the time to take action.
“I definitely recommend antibiotics right away, if your tick tests positive for a tick-borne illness,” she said.
From there, a true diagnosis was only the beginning.
“I felt I was losing my mind and the results from this test made me feel, ‘OK, I’m not going crazy,’” she said. “I have since learned that a clinical diagnosis should be made by symptoms, and not reliant only on test results. There is currently no test that can definitively rule out tick-borne illness. The bacteria that causes Lyme is stealthy and can change forms and hide from your immune system.”
Gaudreau has tried many different treatment protocols, ranging from herbal to antibiotic, and even antimalarial.
“The antimalarial was very tough on me,” she said. “And many of the antibiotics caused gut issues. I felt like I was going through chemotherapy.”
By buying more books, researching online, taking lots of functional tests, and working with multiple healthcare practitioners, she discovered through trial and error that an herbal protocol worked best for her.
Today, she carries around a tote bag of around 40 herbal supplements that she takes daily. None of the supplements are covered by insurance, nor are any functional tests like iGeneX, which run into hundreds of dollars out of pocket each month.
“It’s combating multi-systemic infectious disease syndrome,” she said. “That means you can’t just take one approach with Lyme. You have to heal all of the systems that work together in your body one by one.”
What people do if they don’t have the money or the knowledge to go the naturopath route?
“I’ve been told that many people with Lyme don’t get out of bed each day,” she said. “I would often sleep for 10-12 hours a day, and would still have a hard time getting out of bed and getting through my day.”
This summer, while she still works to maintain her own health daily, Gaudreau decided to post a recipe on her Facebook page for her friends on natural tick repellent. She got so many requests to make up a batch, she put together dozens of bottles of Angelica’s Essential FOFF Tick Repellent.
“You can pronounce it ‘Foff’ or ‘eff off’ whatever you like,” she joked. ‘“I just didn’t want to put DEET or other chemicals on myself or my kids, especially as I was already battling chemicals.”
Though she is did not intend to make these bottles for public sale, as it is was just a part-time hobby, the demand is growing and she is working on making it available to the public. She has set up a Facebook page to keep people informed, FOFF Tick Repellent.
“Unfortunately, my story [of contracting Lyme disease] is still a common one,” said Gaudreau. “I’ve heard so many stories similar to mine, stories of people who knew they were very sick, were brushed off by their doctors and therefore, not treated early enough. Most people can avoid what I went through, and what I am still going through, if they get treated early enough. The more time the bacteria has in your body without being treated, the more damage it does and the harder it is to get rid of. Fortunately, there are a lot of mainstream healthcare professionals that are well educated in tick-borne illness. And most alternative healthcare practitioners in our area are well versed in tick-borne illness. We have some talented naturopaths, chiropractors, acupuncturists, and herbalists in Maine.
“I want to say to the people out there suffering with chronic Lyme, to stay hopeful,” she said. “Each person responds differently to treatment, but when the protocol fits, wellness can be a reality,” she said. “I’m still not 100 percent, but I am functioning very well these days.”
Kay Stephens can be reached at email@example.com