Daryl Madore / The Times RecordPaula Jackson Jones and Angèle Rice, from left, both of Midcoast Lyme Disease Support and Education, are joined by LymeBuddies co-founders Angela Coulombe and Amy Levasseur, right, at The Times Record Feb. 27 to discuss two events to celebrate Lyme Disease Awareness Month.
“Well, you don’t expect to get sick and go to your doctor and them not be able to help you, no matter how many times you go back,” Paula Jackson Jones recently told The Times Record. “At some point they look at you and they say, ‘Well, maybe it’s time you see a therapist, maybe there’s some stress. How’s your marriage? Maybe it’s menopause. … How’s your relationship with your family?’”
For Jackson and others who live with the effects of Lyme disease, the journey from tick bite to a diagnosis can be a long and frightening one. And it can require a dogged determination to continue to seek care until somebody believes you and has the courage to treat you. (See related story, ‘The Long and Short of LYME’ on page 2.)
“Some of these symptoms ebb and flow. You have your good days and your bad days,” she said. “So people are seeing you one day out at the grocery store and then they don’t hear from you for a couple of days because you’re home and you cannot even get out of bed. And then they see you out again and they say, ‘Oh, well, you look great.’ After a while society starts to turn their backs on you as well because they don’t know if you’re doing it for attention. Marriages have fallen apart. Parents walk away from kids; kids walk away from parents. After a while, the sicker you are, the less support there is for you.”
It’s a reality that Jones and her fellow Lyme awareness advocates — Angèle Rice, Amy Levasseur and Angela Coulombe — concur happens all too often.
And that’s one of the driving forces behind a conference and 5K planned for May 2 and 3, respectively. The four want to educate the public — and physicians — about Lyme disease and treatment options.
Learning Lyme
Angèle’s Wings PhotographyAlison Kelsey-Bryant is interviewed by a television crew during the Augusta Lyme Disease Protest in May 2014. The mother of three has Lyme disease and is helping Midcoast Maine Lyme Disease Support and Education with fundraising and awareness.
LymeBuddies photoRunners and walkers are cheered on during a past Jimmy the Greek’s Maine Mall 5K for Lyme Disease Awareness. The fourth annual 5K will be held on May 3.
Speakers include Dr. Eva Sapi, a Lyme researcher at the University of New Haven (Conn.); Bob Gugiere of IGeneX Inc., a lab that specializes in testing for Lyme disease and associated tick-borne illnesses; and Pat Smith, president of the Lyme Disease Association.
In addition, there will be “Lyme literate” doctors, Lyme vendors and more.
Rice and Jones are co-founders of Midcoast Lyme Disease Support and Education, which offers advocacy and monthly support groups, and organizers of the conference.
Before they began their organization, there was nothing in the area for the Lyme community.
When Jones had just finished her last round of treatment, she was introduced to Rice over the Internet by a mutual friend, Lisa Hilton. The pair later met and did their first advocacy event together.
“In the course of gathering information and resources, we realized how bad Lyme disease was just in the Mid-coast region,” and how there was really nothing available for Lyme survivors like her and Rice. (Jones refuses to call herself a Lyme victim, instead preferring to label herself a Lyme warrior.)
“There’s no support. You pick up the phone to call somebody,” Jones said. “They don’t want to hear it anymore. They think you’re making it up.”
Rice and Jones knew they couldn’t take on the whole state.
“There’s more than 10 or 15 groups out there doing what we do,” said Jones. “We just focused on the Mid-coast region.
“We knew what (information) was out there,” she said. “We just needed to bring it to the local community. This is here for you. Use it.”
The two lead a support group on the second Tuesday of the month at the Midcoast Recreation Center in Rockport, and at Wiscasset Community Center on Route 27 the last Tuesday of the month. Both groups meet from 6-8 p.m.
“This is the reason we all became advocates, because we don’t want people to reinvent the wheel,” said Levasseur. “This is what each of us went through and there are so many diseases that seriously impact your life or can be terminal even that they get follow-up and resources and support groups and all this information from their doctor. But with Lyme disease, you don’t get that. And we’re trying to bridge that gap.”
LymeBuddies
In August 2007 following the Beach to Beacon 10K road race, Coulombe noticed pain and swelling in her leg. Initially she assumed it was a sports injury, and began physical therapy. But the pain didn’t go away, and soon more and more symptoms kept coming up.
“But I still didn’t know they were Lyme related,” she said. “All my joints started to ache, and then I started to get nausea, headaches, extreme fatigue, sensitivity to light, bad migraines, and then it wasn’t u
ntil three months later in October that I had a bulls-eye on my upper left arm.
She got a Lyme diagnosis after that, but a standard three-week course of Doxycycline was not enough to not treat the disease. She said she had gone “from being a very active mom and athlete to someone who couldn’t get off the couch. I couldn’t dress myself, climb stairs, or roll over in bed unassisted without my husband helping me.”
When she called her infectious disease doctor back she was told, “we all have aches and pains, and what you’re suffering from has nothing to do with Lyme disease. It’s old age and arthritis.” Even though by this time she had already gotten a diagnosis of Lyme disease and tests had ruled out rheumatoid arthritis, Lupus and Multiple Sclerosis, her doctor was still resistant to treating her.
At that point, Facebook was really just starting up, there wasn’t a lot of social media and activism online, and to get information, if you’re not going to get it from your doctor, “you pretty much are left at that stage to figure it out on your own,” Coulombe said. “And try to understand how y
ou’re gonna get better.
“When you’re at your lowest of lows and you’re scared for your life because you’re really not sure how it’s going to turn out, it seems pretty clear cut: Live or die,” she said. “That’s it. Those are your choices. … Or live with no quality of life.”
So she resorted to start making connections and was introduced to Levasseur, who was diagnosed in 2006.
They were determined to help each other get through their daily struggles, to be a “buddy” to each other; and, Coulombe said, to “have that person on the other end of the phone validating your feelings and understanding and offering support” was crucial.
The two determined that when they get well, they should offer that service to other people — to offer support and help as best as they could. The two co-founded the nonprofit LymeBuddies organization in 2008 with a mission “to offer support to those who are affected by Lyme disease, and to raise awareness to the general public about this devastating, misunderstood illness.”
Coulombe went on to explain that for people suffering the excruciating pain of chronic Lyme disease, it can be a life
or death decision.
“We want people to choose life,” Levasseur said, noting there is a high suicide rate for people suffering from the effects of chronic Lyme disease while admitting that she herself had once considered it.
They want the medical community to step up and help, “because no one should be told it’s all in their head or it doesn’t exist,” Coulombe said. “And more should be done for people who have what we consider chronic long-term Lyme. And this conference is a fantastic way of getting more information out there.”
Walk for awareness
On May 3, the fourth annual Jimmy the Greek’s Maine Mall 5K for Lyme Disease Awareness, kicks off at 9:30 a.m. Same-day registration starts at 7 a.m.
The event course — run or walk, whatever you can do — follows the outer edges of the Maine Mall complex, and is open to anyone, regardless of ability.
The cost to pre-register is $17, or $25 with a shirt if registering before April 12. Same-day registration is $20.
All runners and volunteers may partake in a free pizza buffet following the race, with beverage specials. Family members can eat for $5 each.
Awards will be given to the top 3 overall male and female runners, and the top two overall in the following categories: 19 and under, 20-29, 30-39, 40-49, 50-59, 60-69, 70-79, and 80 and older. There will also be awards for top two running club, corporate and open teams of four or more people.
For details and to register, visit www.lymerun.com. Proceeds benefit LymeBuddies (www.lymebuddies.com).
In addition to the 5K, LymeBuddies will sponsor the fifth annual Lyme-Aid Music Festival at Thompson’s Orchards in New Gloucester on Sept. 13.
Building bridges
There are a lot of different advocacy groups in Maine, noted Jones.
“Some are more about education, others are more about support, others are more about raising awareness, like LymeBuddies,” she said. “We’ve been able to form an incredible support community here in Maine together for a common goal. We all have our different strengths.”
Rice noted that advocates communicate online a lot, so when she realized her group’s event and the 5K were on the same weekend, “what a great way to say, ‘Look you can get some education and then after you can go to a 5K and help raise money and awareness that way,’” Rice said. “Even talk to patients. Get to know us. Get to know me as an individual and as a person. I may be an advocate but I’m still a human being. I have sick days and I have OK days and I have to write down notes just to remember what I just thought, just so I could say it. That’s my every day life.”
She noted that the goal of all of it is to build bridges, though, between the community, patients, doctors and the patients’ families.
“It’s not about saying, ‘Well, that doctor won’t treat you, therefore he’s bad.’ It’s really and truly about building the bridges and the conference allows other health professionals to come in and give that information to other professional doctors in the area,” Rice said. “So therefore you’re having peer-to-peer sharing of information. … If you have a medical doctor that’s ‘Lyme literate’ talking to a local medical doctor, they’re speaking the same language. And they’re going to understand one another.
“And that’s what’s really needed. A lot of patients go out of state to get treated right now because there’s not enough Lyme literate medical doctors and Lyme literate naturopathic doctors to help.”
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