When Paula Jackson Jones first met Angele Rice, introduced through a mutual friend living in Wisconsin, they had no idea of the path they were stepping out on. Both survivors of Lyme disease, though Rice is still fighting her battle, they sought to bring support to a region ravaged by cases of Lyme.
“No one should have to face this battle alone,” Jones said.
To that end, the two friends began the Midcoast Lyme Disease Support & Education group. The group is a nonprofit organization that fills a void for those living in the Midcoast and dealing with Lyme Disease. It works to raise awareness, foster education, advocate for positive change and provide local community support.
Support groups meet in Rockland, Wiscasset, Damariscotta and Brunswick, and starting Feb. 18, in Boothbay Harbor. The Boothbay Harbor chapter will be run by Jones and Lyme survivor Benny Borkowski, who lives in Boothbay and stepped up to help. The group will meet on the third Thursday of each month from 6 to 8 p.m. at the Community Center in the Meadow Mall.
“Jane (Good) was wonderful, she listened to us and told us, ‘We need you here’ when we wanted to use the center,” Jones said.
The two founders stressed how important it is that this group is for support, but that people suffering from Lyme need real medical attention.
“Never self medicate,” Rice said. “It's a multidimensional issue that needs serious treatment and expertise.”
The group provides referrals to top Lyme medical providers for testing, diagnosis and treatment, often bringing professionals to speak with their support group members, including not only “normal” medical doctors but also alternative doctors, mental health professionals, acupuncturists and massage therapists. They research fully every person they bring in to help.
“A major issue with Lyme disease is a lack of understanding how complex it is,” Jones said. “Some doctors follow the IDSA (Infectious Diseases Society of America) rules, which haven't been updated since 1971. They state that to contract Lyme, you must be bit by a tick, which must be attached for X number of hours, and you can treat it with this drug for seven days.”
“Lyme is not a one-size-fits-all issue,” Rice said. “One tick can carry more than one disease, there can be a combination of issues and co-infections can throw off test results.”
“It's like going to a doctor with a sore throat, ear infection, and runny nose and them telling you one medicine will clear it all up in seven days and if it doesn't, you weren't sick begin with,” Jones said. “And it doesn't help that the longer you go without being diagnosed, the harder Lyme is to treat.”
People suffering from Lyme have always had a difficult time getting their symptoms treated, and Rice and Jones were no different. Rice was bitten by a tick at the age of 13, and wasn't diagnosed as having Lyme until age 30. Those 17 years in between she suffered from constant health issues, ranging from asthma to fog brain, anxiety, depression, paranoia, allergies, nerve pain and inability to keep a healthy weight.
She suffered through, until she had her son John-John at the age of 27 and the severity of her symptoms kicked into high gear. She endured ridicule from many doctors who told her nothing was wrong and that it was “all in her head,” and she was “looking for attention” before she went to a naturopathic doctor who believed her.
“One nurse...I could see what she was writing on my chart,” Rice said. “It said ‘she's back again’ and ‘hypochondriac.’ I was choking back tears, I wasn't faking and no one believed me.”
She was tested for Lyme disease and co-infections and the results were positive. Finally, she had an answer. Her journey to recovery has been difficult, as she has also been diagnosed along the way with several other gene mutations and Celiac disease, making proper treatment of Lyme a more arduous task.
Jones was bitten in October 2009 and went undiagnosed for almost 18 months. Numerous doctors misdiagnosed her, stating she had everything from Chronic Fatigue Syndrome to Fibromyalgia to MS. The brain fog was taking over, her vision was vanishing and even walking took great effort. Then in 2011, she got her diagnosis and began treatment. Today her illness is in remission, but as with many strains of Lyme, the disease is never fully eradicated and can flare up again.
Though the efforts of Jones and Rice, major strides have been made in Maine, including laws protecting doctors who are treating Lyme disease and sometimes have to go outside the realm of normal medicine, such as longer-term use of antibiotics. But the biggest change is advocacy, and giving a voice to people who feel they are losing hope.
“The number one cause of death for people with Lyme disease is suicide,” Jones said. “People die because no one believes them, they say nothing is wrong, and they can't take the pain and suffering any longer. This group is a lifeline for people. We've experienced their pain, we've been there and validate their feelings.”
“They are not faking. They are suffering. And we will never turn our backs on them,” Rice said. “It is all about the patients, giving them compassion, dignity, and respect that they deserve.”
For more information about Midcoast Lyme Disease Support & Education, contact Paula Jackson Jones at (207) 446-6447 or by email at firstname.lastname@example.org. Information can also be found at www.midcoastlymediseasesupport.blogspot.com.