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When a body attacks itself
One woman's medical mystery
Imagine living with constant, debilitating pain--pain so severe, it leaves you fatigued and immobile, your joints and limbs inflamed and swollen. And what if these and numerous other symptoms left your doctors stumped? What if no one could give your disease a name, a diagnosis or a treatment plan?
For Julie Loofbourow, a 51-year-old Enumclaw resident and local deputy sheriff, the only brief escape from this reality were the few scalding hot showers she managed to take each day and burying herself in her work. Julie has an auto-immune disease, one that has no clinical name. She refers to it as the "flu that never went away."
Auto-immune diseases are illnesses that occur when the body is attacked by its own immune system. There are hundreds of known auto-immune diseases ranging from common ones like such as diabetes, multiple sclerosis and rheumatoid arthritis, to more unfamiliar ones such as celiac disease – a genetic intolerance to gluten and other substances typically found in wheat. And then there are the unnamed disorders, which, as in Julie's case, have no specific diagnosis.
Julie's body had been malfunctioning for years. She experienced occasional incapacitating flare-ups, sometimes leaving her confined to bed for days. But one fall morning, more than a year ago, Julie woke up and could not move. Her joints and muscles were petrified, literally frozen in place.
"After all those days of pain and all those days of work I missed, I reached a point where I just thought I was dying," she remembers. "No doctor could tell me what was wrong."
An allergist told her to eradicate all but potatoes, pork, salmon and a few other foods from her diet. Her primary care doctor recommended vitamins and she began taking daily supplements. None of it worked. In six months, Julie had lost nearly 40 pounds, missed more than 30 days of work, and was taking more than 15 Tylenol tablets a day. She began to realize that she could no longer go on living as she was. Finally, after five years, countless doctors, multiple MRIs, hundreds of blood draws, hours in bed and a medical leave of absence, Julie was referred to The Seattle Arthritis Clinic.
Julie's condition is generally known as polyarthralgia, or pain in one or more of the joints, says Dr. Jeff Peterson, a founding partner of The Seattle Arthritis Clinic and Julie's physician.
"When I first saw her, Julie was very fatigued and missing a lot of work," he recalls. "She was forgetting a lot of words and could hardly move around the exam room."
Dr. Peterson's initial work-up showed no indication of any inflammatory disease, but it did suggest she might have specific food sensitivities that could be causing chronic pain and fatigue. In turn, the pain and fatigue led to anxiety and depression. He immediately referred Julie to the clinic's staff nutritionist, registered dietician Heidi Turner and stress management counselor Francesca Licciardi.
With Turner's help, the team quickly discovered Julie's immune system was being "turned on" by some of the foods she was eating. "These food sensitivities were causing low levels of local inflammation," Dr. Peterson says. "Essentially, her body began to attack itself."
Bite by bite, Turner helped Julie build her diet back up, but it didn't happen overnight. Reintegrating foods took time, patience and hard work, starting with a small piece of chicken, carrot or whatever new food Julie chose for the day. If she could safely eat the new food without a reaction, then she could move on to larger portions.
"I don't know where I would be without her," Julie says of Turner. "I imagine I would have starved to death."
Turner's work is not limited to identifying food sensitivities. She also helps patients make dietary adjustments that can reduce inflammation and pain. Dr. Peterson's reliance on Turner's knowledge and expertise reflects the clinic's proactive, multi-disciplinary approach to patient care. The clinic treats a range of auto-immune and musculoskeletal illnesses, meaning it offers a broad spectrum of services to address the distinct facets of each disease.
While Turner reintroduced Julie to old foods, Licciardi worked to help her learn coping skills. Chronic pain can be an emotionally charged, draining experience, and the mental hurdles associated with pain and fatigue are challenging. That's where Licciardi's stress management counseling comes into play.
"I help my clients develop a practice of relaxation in their lives," she explains. "It is important to identify the physical place your body feels it's healthiest. Then one can tune into the areas of the body that carry the most stress and learn to release it before the tension affects the rest of the body causing more pain."
Julie calls it "breathing into the pain". "The world has a natural rhythm, the same way water has a rhythm, and mine seems to be a bit off," she says. "By meditating, I am able to locate that rhythm again and begin to function as I normally would, without pain."
Dr. Peterson says practitioners with different specialties like Licciardi, Turner and himself, working together as a team, are part of The Seattle Arthritis Clinic's integrated care model, an evolving trend in patient treatment. The idea is to create a single "medical home" where patients can receive a variety of treatments, all of which address complex and often interdependent problems.
"We may not have a name for Julie's condition, but we are treating all aspects of her life, not just one symptom," he explains. "We are a one-stop shop, meeting nutritional and dietary needs while also providing mental health counseling, lab services, and of course, the medical component. These are all important steps in the healing process."
After all the treatment and years of soreness, stiffness and downright agony, Julie says the care team at The Seattle Arthritis Clinic helped her regain confidence, and more importantly, her sense of optimism. She says she isn't afraid anymore.
"I can get through this," she repeats a few times, like a personal mantra. "I can tackle this disease and I am not alone."