Sharing stories, ideas: New support group helps Lyme disease patients
It took a long time for Neen Lillquist to recognize that her symptoms pointed to Lyme disease, which is carried by the Eastern black-legged tick, also known as the deer tick. Now, she's trying to help raise awareness of Lyme through a new support group.
Sixteen people attended the first meeting in March. The next, in May, drew 28, a snug fit at MedSave Family Pharmacy, which is hosting the group.
The group meets at 5:45 p.m. on the second Wednesday of every other month. Lillquist said the bimonthly meetings are held in the odd-numbered months, because Lyme is an "odd disease."
Hard to diagnose
Tessa Lauderbaugh thought she had a bad case of the flu in the fall of 2006.
By the summer of 2007, she was weak and exhausted, "like something sucked all the energy out of me. I literally couldn't lift my arms."
She sought medical attention several times. Each time, she tested negative for Lyme disease. One doctor suggested she cut back on salt and get exercise. "I left there bawling," she said.
When she was finally diagnosed, 'I said, 'I knew it all along,'" Lauderbaugh said.
On a list of chronic symptoms of Lyme disease that support group participants collaborated on, she said she had experienced every entry except Bell's palsy.
Even after treatment (she is currently off antibiotics), Lauderbaugh must work part time because she still doesn't have the energy to hold down a full-time job.
Last spring, her son Travis, then 8, was hospitalized with a severe case of Lyme disease.
"He could hardly walk," Lauderbaugh said. "He had rashes and bull's-eyes all over his body."
"I'm really thankful for this group," said Lauderbaugh's mother, Debbie Braaten. "I've seen my daughter suffer for six years, and my grandson, too."
Lillquist was first diagnosed with Lyme in 2009 after she noticed a small reddened spot that kept growing. Antibiotics took the symptoms away. In May 2010, she found another spot on her arm and immediately visited the doctor's office, where she was given two weeks of antibiotics.
She got better almost right away, but later experienced a series of symptoms, starting with severe pain in her hip. That was followed by extreme fatigue, paranoia, "brain fog" and sun phobia, in which a crippling fear kept her from going outside - all of which are completely out of the ordinary for her. Pain in her back and knees was joined by severe headaches and jaw pain.
On Oct. 14, 2011, both her knees collapsed, which caused Lillquist to consider chronic Lyme disease. She received antibiotic treatment.
Cindy Dainsberg and June DeGrote are both from Laporte, and both have Lyme disease.
Dainsberg has been sick for four years. "It's been particularly bad the last three years," she said. "You feel like you're doing to die."
DeGrote, who has been sick for 2½ years, has had stomachaches that were so bad, she would scream when her family was out of the house. She said even standing can be painful.
Mackenzie Piprud, 19, was misdiagnosed for three years, her mother, Renee Lukkason, said.
Piprud, Lillquist's great-niece, is being treated with antibiotics and supplements.
"I have more energy, but I still have memory loss and brain fog," said Piprud, a freshman at Bemidji State University. "It's really tough sometimes. I wouldn't get out of bed at all."
Several members of the Brainerd Lakes Area support group, an MLA affiliated group that meets in Pequot Lakes, attended the Bemidji group meeting.
"With this disease, you have to learn it yourself," Lillquist said. "You really have to take charge of your own health care and your own self."
For more information about the Bemidji group, email Lillquist at email@example.com.
Chronic Lyme disease
The Minnesota Lyme Association has been very supportive in getting the Bemidji support group off the ground, Lillquist said.
"The goal is to get people diagnosed and in treatment so they don't have to be in treatment so long and spend thousands of dollars," she said.
Dr. Elizabeth Maloney, who lives in Wyoming, Minn., is an adviser to the Minnesota Lyme Association. Her advocacy for Lyme disease awareness was sparked when a lot of her Lyme patients did not fully recover.
"I went to the original animal trials, what we call the benchwork, the basic science," Maloney said. "It turned out this bacteria is very, very complicated and has very complex adaptation methods. It's a survivor."
Maloney now heads the Partnership for Healing and Health, through which she works to educate physicians about Lyme disease.
The International Lyme and Associated Diseases Society and the Infectious Diseases Society of America have conflicting guidelines on treatment of Lyme disease. IDSA calls for specific medical treatment for Lyme, while ILADS, whose guidelines Maloney wrote, are more philosophical and patient-centered.
"One of the challenges Lyme patients face in the United States is the CDC and a lot of the mainstream medical associations take their cues from the IDSA guidelines," which do not recognize chronic Lyme, said Monique Dubos, president and communications coordinator of the Minnesota Lyme Association.
"They're really good practitioners and they're practicing what they're taught, and using the standard guidelines," MedSave pharmacist Richard Chernugal said.
Chernugal said he would like to see more medical practitioners "think outside the box. It's not necessarily arthritis or lupus."
Lillquist recommended support group members go to an ILADS doctor.
The Centers for Disease Control and Prevention does not recognize chronic Lyme, but instead refers to "post-treatment Lyme disease syndrome" and says the exact cause is not yet known.
The Minnesota Department of Health states on its website that "long-term or repeated antibiotics for the treatment of 'chronic' Lyme disease is not necessary, safe, or recommended."
Some of the people in the Bemidji support group say they have received positive results from taking veterinary antibiotics they purchased online. While Dubos and Maloney support long-term antibiotic treatment, they don't endorse self-medicating.
"I think that's fraught with danger," Maloney said. "Lyme is really complicated, and meds are really complicated."
She believes, however, that people in Lyme support groups are there because they have been marginalized by mainstream medicine.
"They can't get diagnosed, they can't get treated, and that's why they do things like order veterinary medicine."
Dr. Paul J. Carson, chairman of the Department of Infectious Disease and director of clinical research at Sanford Health in Fargo, supports the IDSA guidelines. He said the "vast majority" of Lyme disease patients do well, especially when treated early, but a minority, he said, have "ongoing subjective symptoms."
"The course of treatment depends on the stage of the illness," Carson said. "If we diagnose Lyme disease, they may get pill meds (10 to 28 days of antibiotics, typically doxycycline) or they may get IV meds. For late-stage and neurologic Lyme, IV medication is usually used."
Carson said clinical manifestations of Lyme are categorized into early, disseminated and late, all of which have bacteria present.
Post-Lyme disease syndrome, he said, involves someone who has had Lyme disease but, six months or more beyond the original diagnosis, suffers from symptoms such as aches, pains, confusion, numbness, fatigue and others.
"This is where the controversy comes in," he said. "Where we would sort of split up here on our opinions is that ILADS-type providers would say that may be because there's ongoing bacterial infection. We would say we don't know for sure that's ongoing, because there's no evidence of ongoing bacterial infection and no evidence that giving antibiotics gets rid of it."
Carson has challenged the "alternative Lyme management community" to develop a precise definition of chronic Lyme disease so it can be differentiated from other medical conditions with similar symptoms; provide direct and unequivocal evidence that a patient suspected of having chronic Lyme disease really has a persistent B. burgdorferi infection that justifies antibiotic therapy; and demonstrate that antibiotic therapy is beneficial and safe for treatment of chronic Lyme disease, through the results of published, peer-reviewed, randomized, placebo-controlled trials.
He said the National Institute of Health spent $8 million on four trials in which extended courses of antibiotics were given and compared to placebo treatment.
"None showed any benefits over placebo. One of them showed slight improvement in one of the fatigue scores. The other three did not."
"I feel for the people in Lyme support groups," Carson said. "I feel for them. They are suffering from something. It may be due to the after-effects of Lyme disease."