Paula Jackson Jones, the co-founder of Midcoast Lyme Disease Support & Education, is using her own journey with Lyme Disease to help others.
Midcoast Lyme Disease Support & Education has two support groups that meet monthly in Wiscasset and Rockport and participates in community events.
“We want to raise awareness, foster education, advocate for change, and provide support for those affected by Lyme Disease,” Jones said.
On Saturday, May 2, the First Annual Midcoast Maine Lyme Disease Support & Education Conference will be held at the Wiscasset Community Center from 8 a.m., and 5 p.m. This is a free community event.
According to Jones, the support group has medical experts in the field of tickborne diseases come and speak to educate and share their knowledge and treatment techniques.
In April, the group will be one year old, and Jones will have been in remission for a year.
“I was bit by a tick in October 2009 when I was doing yard work with my husband,” Jones said. “I found the tick when I was getting ready to take a shower, took it off of me, and didn’t give it another thought.”
Jones started seeing her first symptoms within a week.
“I didn’t have a bulls-eye, but I had a splotchy red rash. I started getting headaches, a stiff neck, insomnia, and anxiety,” she said.
Her primary care physician treated her symptoms as “holiday stress,” giving her anti-anxiety medicine.
By January, the symptoms continued, and got worse. The next doctor diagnosed her ongoing symptoms and her racing heart as having panic attacks.
“My sister-in-law had a friend with Lyme Disease,” Jones said. “She said the symptoms sounded similar [to hers].”
At her next doctor’s visit in March, she asked if she could possibly have Lyme Disease, and the doctor said, “No.” Jones demanded a Lyme test, which came back negative.
By spring 2010, Jones was going to her doctor twice monthly, with different symptoms visible at every visit.
Her symptoms included chronic headaches, blurred vision, sensitivity to light and sound, cognitive issues, confusion, joint pain, neck pain, inflammation, muscle pain, gastro-intestinal issues, inability to recall names and places, and a burning sensation.
Monthly visits to her primary care doctor continued to bring about a variety of diagnosis.
“The doctors thought it was depression, multiple sclerosis, fibromyalgia, or chronic fatigue syndrome,” she said.
Jones saw multiple specialists and had several tests run. All came back negative.
Eighteen months after the initial bite, Jones was in the emergency room with a gastro-intestinal infection.
Fed up not getting any definitive answers or diagnoses, Jones was referred to a Maine naturopathic doctor who had experience dealing with Lyme Disease.
“At this point, my cognitive and neurological symptoms were so severe I couldn’t communicate effectively my medical history to her because of the disease,” she said. “The doctor had to ask me everything.”
Jones was sent to a doctor in New Hampshire who was considered a Lyme Disease expert to have tests run, and 18 months after the initial tick bite, Jones’ was finally diagnosed with Chronic Neurological Lyme Disease, with four co-infections.
“Ticks carry multiple diseases,” she said. “I had Babesia, Bartonella, Ehrlichiosis, and Rocky Mountain Spotted Fever.”
After she started getting the proper treatment, Jones stayed with her naturopathic doctor. Because the antibiotics had failed, Jones decided to try something else.
“My entire treatment to remission took three and a half years,” she said. “Because of the severity of my symptoms, I lost my job, my ability to drive, and my ability to do daily household chores.”
During Jones’ first year of treatment, she was housebound, except for her doctors’ appointments.
“Life was passing me by, and I didn’t even care. I was too sick to comprehend it all,” she said.
By 2013, Jones began immersing herself in Lyme Disease education and becoming more involved as an advocate.
What Jones found was that the Center for Disease Control and the Infectious Diseases Society of America had not evolved their protocols as the disease had evolved.
“Like all diseases that have evolved, the current guidelines and treatment protocols remain antiquated. That’s why we have groups fighting for change,” Jones said.
According to the CDC, during the early localized stage, three to 30 days post-bite, symptoms include a red, expanding rash, fatigue, chills, fever, headache, joint aches, and swollen lymph nodes.
“Some people may get these general symptoms in addition to a rash, but in others, these general symptoms may be the only evidence of infection,” the guidelines read.
Untreated, symptoms include other lesions and rashes, Bell’s palsy, severe headaches and neck stiffness, pain and swelling in joints, and heart palpitations, according to the CDC website.
According to Jones, only a small percentage of people fit the original guidelines.
The Midcoast region of Maine is the hardest hit with Lyme Disease cases. Since 2010, Knox County has had the highest count, followed by Lincoln and then Sagadahoc.
“If doctors are not educated enough to recognize the diverse early stages of Lyme Disease, Lincoln County will remain second, or even first on the list in Maine next year,” Jones said. “You know your body better than anybody. You shouldn’t have to fight to be believed.”
Midcoast Lyme Disease Support & Education has information and resources to connect people with Lyme Literate doctors in Maine.
“Currently, doctors who treat outside of the CDC/IDSA guidelines are prone to disciplinary actions by the medical board and their peers,” Jones said.
Maine has LD 597 in effect to give patients and doctors direction. Jones is currently working with a group of Lyme Disease advocates on LD 422 to protect doctors who are diagnosing and treating patients with Lyme Disease until they are better.
This bill goes before a public hearing March 17, at 1 p.m.
“Maine is the last state in New England to have a law in effect to protect its doctors,” Jones said.
When asked about her journey with Lyme Disease and how long it took her to be diagnosed, she said, “I don’t have time to be bitter. I would rather spend my time helping to support and educate others. Change will come.”
“I’m not mad at the doctors because they failed to diagnose me, I’m mad that there isn’t enough mandatory education and evolving guidelines to prevent this disease from becoming chronic and ruining lives,” Jones said.
Jones still has light and noise sensitivity, and tires easily.
When asked about her current state of health, Jones said, “Even if this is as good as it’s going to get, I’m okay, because I’m helping others. I’m doing everything in my power to help people who are in the same situation I was in.”
For more information on the Midcoast Lyme Disease Support & Education, visit www.midcoastlymediseasesupport.blogspot.com.
