The wolf at the door: Kimberly Lord Stewart describes her battle with lupus as she explores the fine line between western medicine and alternative therapies

I inherited my mother's blond hair, blue eyes and her trait for the autoimmune disease lupus. In fact I got my premature start in life because of it. Although there wasn't even a name for it at the time, lupus--Latin for wolf because of the characteristic mask-like rash that often appears across the bridge of the nose--grabbed hold of my mother in the sixth month of her first pregnancy. Just before the wolf pushed her into a coma, she gave birth to me, a palm-sized, 2-pound 4-ounce baby gift.

We both survived, by no small miracle, and got on with our lives, It wasn't until 13 years later that my lupus education began when I came home to see an ambulance parked in the driveway with my mother inside. The mysterious malady that had made her so ill when I was born had appeared again--part of a pattern of attack and remission that I later learned comes with the disease. The next five years were filled with more ambulances, doctors and frustration. Relief came when a rheumatologist finally put a name to her disease--systemic lupus erythematosus (SLE).

Lupus isn't a disease that affects just one system of the body. This is one reason it's so difficult to diagnose. Essentially, the immune system becomes "confused"--that is, it can't tell the difference between foreign substances and its own cells, so antibodies mistakenly attack healthy tissue, causing inflammation and injury to skin, blood, joints and organs.

The wolf began to circle my home a few years ago, when 14 hours of sleep a day weren't enough to keep me rested, and pain began creeping into my joints. I saw half a dozen specialists and coped by napping in between writing assignments and doctor's appointments.

I almost gave up once, telling my husband, "No more doctors without answers." Yet, the elusive disease finally emerged with enough definite symptoms for the white coats to figure out that my suspicions were right all along: I had lupus too.

My experiences and my mother's aren't unusual--it takes most lupus patients three years to get a firm diagnosis. The disease has only been recognized since 1972, the year my mother was first hospitalized, and 33 years later, there are still only 4,000 board-certified rheumatologists with the know-how to diagnose it.

It's really not an exaggeration when lupus patients say they feel like they saw all 4,000 of them before getting a definitive diagnosis. It doesn't help that the symptoms come and go--disappearing for weeks, months or even years and then suddenly flaring up again. So one lab test may be positive and the next negative.

Except for the mask-like rash, which not everyone gets (my mother and I don't), people with lupus don't look sick--and they often hear just that from uninformed doctors.

Then there are the vast differences in symptoms. Ask any patient what ails them and you'll get a baker's dozen of different answers including joint pain, fatigue, rashes, hair loss, mouth sores, blood clots, seizures, migraines and more. Any one of these symptoms can send doctors and patients looking for answers in other areas of medicine. I tried allergists, acupuncturists, immunologists, tropical disease specialists, oncologists and finally a rheumatologist.

The only commonality among lupus patients is a positive test for antinuclear antibody (ANA), although even this tends to fade in and out. More than half the children of lupus patients test positive for ANA, whether or not they have the disease. To be clinically diagnosed, you must have a positive ANA and three of 11 other symptoms, notwithstanding about a dozen overlapping syndromes, including fibromyalgia, Sjogren's (dry eyes, mouth) and Raynaud's (painfully numb hands and feet). Mathematically, this means there are thousands of different possible manifestations. My mother has had at least six lupus criteria in her lifetime; the more serious ones include inflammation of the heart and lungs, blood clots and neurological problems, along with less grave arthritis, fatigue and Raynaud's. So far, I only have three--a positive ANA, arthritis and fatigue--which is why doctors won't say I have full-blown lupus. And I'm just fine with that.

Despite the words attack and inflammation, living well with lupus is doable. Mostly, the symptoms are mild; however, serious problems are possible, especially over time. That's why no matter how frustrating the process is, getting diagnosed and treated is vital.

As difficult as it was to be diagnosed, my continuing struggle comes from the fact that I will be on one drug or another for the rest of my life, and I make no qualms about saying so. My doctor's appointments are more like exercises in bartering. I negotiate my doses down to the lowest possible amounts, in hopes of using some complementary therapies, which I always tell my doctor about. For instance, I take fish and flax oil to keep inflammation down, vitamin C and B complex for cellular stress and a multivitamin with minerals for joint health.

Well-meaning friends often suggest immune-enhancing herbs such as echinacea and astragalus, but these can exacerbate lupus, as can alfalfa sprouts. With so many functional foods and supplements on the market, it's important that I study the ingredients and show them to my doctor. "A lot of promising alternative treatments seem to boost the immune system, but the immune system of lupus patients is already overactive--that's part of the problem. Anything that adds to that can cause problems. Besides, we don't know how they react with lupus drugs and the lupus distorted immune system," says Sam Lim, MD, Chief of Rheumatology at Grady Memorial Hospital in Atlanta.