Julianne Davis felt achy and too tired to move—and as weeks turned into months, the feeling didn’t go away. Her doctors said she was fine and would get over it in time. She didn’t. Here’s the story of how Julianne got the answers she needed to live her best life, despite a brutal diagnosis.
A few years ago, Julianne went through in vitro fertilization, a two-part medical procedure requiring rigorous, daily testing, which typically extracts a high, emotional toll. “My body came out of it feeling tired. At first, I thought it was just the IVF, and the underactive thyroid, my doctors discovered during treatment,” she says. As the months went on, her symptoms didn’t improve. Julianne went to see a rheumatologist, who ran no tests, and said she was fine. “By now, I had brain fog and pain, as well as fatigue. I did research on my own and found out about fibromyalgia by googling my symptoms.” (If you start feeling like Julianne, be on the lookout for these other fibromyalgia symptoms.)
Julianne’s online research led her to information about a blood test, which can provide a diagnosis to anyone who thinks they might have fibromyalgia. “I called EpicGenetics and made arrangements to take the FM/a test. It took about two weeks for the results. When I called them to find out what’s what, they were just about to call me. My readings were so high that they provided strong confirmation of the diagnosis, and I just about fell out of my chair with relief that it wasn’t all in my head. ‘Gosh, you must be in a lot of pain, given your results,’ said the woman on the phone. ‘How long have you known you had fibromyalgia?’ About two minutes! I told her.” Armed with answers, Julianne started down a new, unfamiliar path.
A confusing diagnosis, affecting millions
According to the Mayo Clinic, fibromyalgia is a disorder earmarked by widespread, musculoskeletal pain, fatigue, and problems with mood, insomnia, and memory. The onset of symptoms often follows physical or emotional trauma, but may also occur gradually over time, without a specific, obvious trigger. Fibromyalgia is more common in women than it is in men. Its exact cause is unknown, but genetics, anecdotally, appear to be a factor. Research indicates that the chronic disorder is impacted upon by the way the brain processes pain signals, making them more pronounced and severe. This is known as abnormal pain perception processing, and translates into intense, almost-daily pain, for those who have it.
Julianne is not alone in her diagnosis, or in her quest for answers. Around four million Americans, a full 2 percent of the population, have fibromyalgia. “Historically, people with fibromyalgia spent years and thousands of dollars to arrive at a fibromyalgia diagnosis: a diagnosis that was not definitive, and was only arrived at by excluding other possible conditions,” said Bruce Gillis, MD, CEO of EpicGenetics, a privately-held biomedical company. When Julianne made that first, fateful phone call, she got the relief she was hoping for by simply getting confirmation that her symptoms were not all in her head.
A trial study brings hope
Fibromyalgia’s all-too-real symptoms can be debilitating. Too often, so is the medical community’s response to patients suffering with its symptoms. EpicGenetics is trying to change that, working with several medical centers to expand access to a diagnostic fibromyalgia test, identify the genetic markers specific to fibromyalgia, and evaluate whether vaccine treatment can effectively treat fibromyalgia.
The FM/a test is an FDA-compliant blood test, which detects fibromyalgia through the identification of white blood cell abnormalities known to exist in people with the disorder. Since it became available in 2016 as the first definitive blood test for fibromyalgia, it “has successfully and objectively diagnosed thousands of people,” Gillis said, adding that the fibromyalgia test gives patients “certainty about a medical condition that has often been misunderstood, and erroneously denied, as a legitimate medical disorder.” However, there’s a chance you could be mistaking these conditions for fibromyalgia.
Patients who test positive are given the opportunity to participate in a trial study geared towards studying vaccine treatment for the disorder. Work on the fibromyalgia vaccine is currently being pursued at the Immunobiology Laboratory at the Massachusetts General Hospital, by a team led by Denise Faustman, MD, PhD. The work is funded in part by a research gift from Dr. Gillis.
Dr. Faustman’s work is centered upon the 100-year old BCG vaccine, currently used to prevent tuberculosis outside of the US. Global data indicates that this particular vaccine may have life-altering applications for individuals diagnosed with fibromyalgia. Unlike the popular concept of vaccines, the BCG vaccine would not be used as a preventive measure. Instead, the inexpensive shot would be used as a means of correcting abnormalities in the immune system of individuals already diagnosed with the disorder.
“I believe we are at the forefront of advancing scientific information about fibromyalgia and answering these critical questions for patients: 1) Do I have fibromyalgia? 2) How and why did I develop fibromyalgia? and 3) Is there a direct treatment for fibromyalgia?” Gillis explained.
A look toward the future
For Julianne, the vaccine represents hope. “Finding out I have this disease motivated me to focus on it completely. I must have gone to four rheumatologists who didn’t know anything at all about the FM/a test, or the potential for a vaccine. All I heard, over and over again, was, ‘We don’t know what’s wrong with you.’ Now, I know what I have, and I also know that there is hope for the future.”
Julianne calls herself a work in progress. She combats fibromyalgia by walking 30 minutes every day and making sure she gets enough sleep. She avoids gluten because of its link to inflammation and also takes supplements, such as magnesium, ginger root, and gabba root. She also takes a multivitamin daily. “I’m getting closer, but there’s probably never going to be that magic tablet that takes away all of my symptoms,” she says. If you suffer from fibromyalgia, check out these 10 natural ways to treat the disease.
And as for her baby dreams? She’s decided to put them on hold. “I have my hands full with regular life right now. My whole focus is on my own health, and I’m working hard to treat it,” she said. “I really want to figure out what’s going on with myself, and best heal myself, before I go down that road again.”
Pending official approval, clinical testing of the BCG vaccine will begin in fibromyalgia patients within the next two years. Hopefully, that can pave a pathway to fulfilling Julianne’s dreams for a family—and for a pain-free life.