“I’m not afraid to die, I’m more afraid to live, because I’m not sure what this disease is going to do to me next.”
These are the words of Emmett Woodard, a McMinnville engineer who has suffered over four years of mysterious and debilitating symptoms, including chronic pain, fatigue, dizziness, skin rashes, burning eyes and inner ears, joint pain, coordination problems, and wild fluctuations in blood pressure.
During this time, he has seen over 40 doctors of all kinds, including 10 at the Jacksonville, Fla., Mayo Clinic alone.
Woodard has been tested for countless different conditions and treated with at least 30 different prescription drugs, yet his symptoms seem to keep mutating and revolving throughout his system, from skin to eyes, to ears and joints as well as back and forth between his vascular and nervous systems.
Yet after nearly $30,000 worth of medical expenses since October of 2009, Woodard still has not found relief.
His doctors have widely disagreed and often contradicted each other about what ails him, while diagnosing him with everything from neuropathy to fibromyalgia.
Only a few of his doctors agree with what he has come to believe, namely, that the symptoms are the result of an untreated case of Lyme disease, which he said he failed to recognize until months after he had contracted it near the Canadian border.
“I went on a ten-day hunting and fishing trip in Canada, just north of the Minnesota border, back in July of 2009,” he said, “and I remember pulling some deer ticks off of my clothes, but I don’t recall being bitten by anything.”
According to the Centers for Disease Control and prevention (CDC), Lyme disease is carried only by the black-legged deer tick. While cases have been reported in all 50 states, over 90 percent of reported cases come from the upper midwestern and northeastern states.
“The brochure for the area did include a warning about deer ticks,” Woodards said, “but it also stated that no cases of Lyme disease had ever been reported from there, so I didn’t think much about it.
“I remember having some flu-like symptoms when I got back, but I just figured I’d picked up a cold or something. After a few days, I felt fine again.”
Three months later, in October of 2009, Woodard said he sat down with his wife to watch a movie one evening when his living room suddenly started spinning out of control.
“I couldn’t keep my balance and I started throwing up,” Woodard said, “and that’s when I knew something was wrong with me.”
Since that evening, Woodard said, his life has become a never-ending nightmare of revolving symptoms that his doctors can neither explain nor cure.
On top of his symptoms, Woodard said he has also had serious reactions to some of the medications, even contracting sepsis at one point from a tainted IV, yet he continues to beg his doctors for relief through whatever means necessary.
“It wasn’t until after the vertigo attack in my living room that I finally remembered seeing a large, circular rash on my stomach, shortly after I got back from my trip,” he said.
“It was almost like a perfect red circle as I recall, about the size of a mason jar, but it disappeared a few days later, so I didn’t think any more about it.”
While the CDC states that the most common sign of Lyme disease is the “bulls-eye” rash, which resembles a target with an outer ring and a bull’s eye in the middle, many Lyme patients report other types of rashes or spots, while others report no rash at all.
Last summer, the CDC amended its estimate of Lyme cases from 30,000 to 300,000 annually, largely due to the fact that so many doctors and patients fail to notice or recognize the early-stage symptoms accurately.
Most cases can be cured if recognized early and treated with proper antibiotics right away, but many patients also report long-term symptoms like Woodard’s.
While many doctors refuse to even recognize the concept of “chronic Lyme disease,” the CDC does acknowledge a condition they call “post-Lyme syndrome” in roughly 10 to 20 percent of patients, which they say eventually goes away over time.
Woodard, however, feels his symptoms are not getting better and that his time— if not his sanity—is running out.
On January 27, he finally went to Washington, D.C. to visit Dr. Joseph Jemsek, an award-winning infectious disease specialist who is specializing in his own controversial treatment of post-Lyme patients like Woodard.
The treatment consists of several different antibiotics, all taken at the same time, administered intravenously through a peripherally inserted central catheter (PICC) into the heart every day for three to six months or more.
The cost, Woodard said, will be between $30,000 to $50,000, depending on how long it takes to achieve the desired results.
Health insurance will not cover it, he said, due to the strict definition of Lyme disease as determined by the Infectious Disease Society of America.
“It’s extremely expensive and it might not even work, but I’m not sure what else to do,” he said. “I’m reaching a point where I can’t get my work done anyway, and I just want to feel better.”
During the treatment, Woodard will have to go on leave from the job he has enjoyed for many years and where he said he feels respected an appreciated.
“I’m really grateful to my employers for their patience and understanding over the last four years, and I feel very fortunate in that regard,” he said.
His wife Darlene, a tax accountant, continues to be of support but said it’s hard not to get discouraged at times.
“It seems like almost every new thing they try works well for a little while,” she said, “but then it turns back the other way.
“This new treatment is different in that it’s making him feel bad right away, as they told us it would. Hopefully that means it might work in the long run.”