The deer tick is the size of a pencil point, but for Brittany Wedd of Clear Spring, it might as well be the size of a blue whale for the amount of pain, suffering and destruction it has caused in her life.
It is because of a deer tick bite that Wedd contracted Lyme disease. For nearly a decade, the 28-year-old has had to be her own advocate to find doctors who would diagnosis her and find the treatments to combat the side effects caused by the disease.
According to the Centers for Disease Control and Prevention, Lyme disease is the most common vector-borne illness in the United States. An estimated 300,000 people are diagnosed annually.
“I was very sick growing up as a child,” Wedd said. “I had headaches, I had stomach issues. There was a lot of anxiety and overall pain. Doctors couldn’t figure out what was happening. I saw so many different specialists, and nobody had an answer. The fatigue really started to kick in in middle school and high school.”
Then in 2009, while out in Blairs Valley in Clear Spring, Wedd said she came in contact with a tick.
“I had a bull’s-eye rash and everything,” she said. “It was the textbook definition of what Lyme disease was.”
According to the CDC, the early signs of Lyme disease are often either a red bull’s-eye rash around the initial bite or facial palsy and swelling of the knees and joints. If left untreated, the CDC reports, “Lyme disease can produce a wide range of symptoms, depending on the stage of infection. These include fever, rash, facial paralysis and arthritis.”
“And I didn’t feel any better afterward,” she said. “And he said he didn’t know what to do for me, so he sent me to an infectious-disease specialist, who told me Lyme disease did not exist in Maryland, that I didn’t have Lyme disease.”
The CDC reported in 2009 — the year she went to the specialist — that in Maryland, there were 1,466 confirmed cases of Lyme disease. The CDC said in 2014 that 96 percent of confirmed Lyme disease cases were reported in 14 states, one of which was Maryland.
Instead of being tested for Lyme, Wedd said she was tested for lupus, multiple sclerosis and other conditions, the results of which were negative.
Facing the challenges
But Wedd was struggling. She was majoring in astrophysics in college when the disease started to affect her brain and memory.
“I was getting to the point I couldn’t finish basic calculus derivatives,” she said. “I had to drop out of school because I couldn’t even function in class. I ended up working at a gas station to pay for my treatments over the years.”
Losing her skills in math was difficult.
“It was very hard to swallow. I got very depressed. Literally, I held onto the fact that — not to sound prideful — that I was smart and I enjoyed being challenged by math and science, and when I couldn’t even remember what I ate for breakfast, it was very horrible for me,” she said. “It was hard for me to come to terms with that.”
It is also is difficult for others to understand because outwardly, she doesn’t appear to be ill.
“It’s been difficult. I’m one of the more fortunate Lyme patients,” she said. “I have friends who have Lyme disease and are wheelchair-bound or bed-bound because of how debilitating this disease has become. For me, I don’t look sick most days, so it’s hard. People don’t necessarily take you serious. Doctors don’t take you serious, especially when the diagnostic test is so faulty to begin with.”
Her condition worsened because of lack of treatments. That prompted her then-boyfriend Matt, 29, to whom she has been married for seven years, to emigrate from England to help take care of her.
“When it came to a point we couldn’t afford it any longer, he stayed in the country to help take care of me when I was sick,” she said. “I was bed-bound for a period of time.”
Matt, she said, has been her rock.
“I’m very blessed. He’s an amazing guy,” she said. “He has been with me from the very beginning of this struggle. He’s been a shoulder for me. He’s been there every step of the way, holding my hand through this. He researched almost more than I did in the beginning about Lyme disease.”
Finally, Wedd said she was able to find what is called a Lyme-literate doctor who officially confirmed she had Lyme disease.
She said he “looked at my medical history and determined that I probably was infected as a child because my blood work came back off the charts, essentially.”
The Lyme-disease controversy
Wedd’s struggle to find an initial diagnosis is more common in those with chronic Lyme disease or what the CDC calls Post-treatment Lyme Disease Syndrome, or PTLDS.
In fact, doctors and specialists argue over how to officially diagnose and treat it. Although doctors agree that Lyme disease exists, some say that PTLDS does not exist and that an antibiotic treatment can help.
In his column for The New Yorker, “Annals of Medicine,” Michael Specter tackled the problem in his July 1, 2013, column titled “The Lyme Wars.” Specter wrote, “The controversy over Lyme disease is unlikely to diminish until scientists resolve at least two critical, but related, questions: Can the bacteria persist in the body, causing harm and illness months or even years after treatment has ended? And can prolonged antibiotic therapy destroy the remaining bacteria? Here, as with nearly every issue related to Lyme and its treatment, there is disagreement not only about the answers, but also about the questions.”
Columbia University Medical Center in New York City also looked into the controversy.
“The CDC criteria are not very helpful for helping the clinician to detect late-stage neurologic Lyme disease,” it states on its website. “For example, the most common manifestation of late neurologic Lyme disease is cognitive dysfunction (often referred to as ‘encephalopathy’). A patient who presents with new onset encephalopathy and a positive blood test for Lyme disease would not be considered by the CDC to be a case of Lyme disease.”
And Columbia University Medical Center further states that although the CDC recognizes that encephalopathy does exist, “encephalopathy is not part of the ‘surveillance case definition.’ Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease. In these cases, the patient’s treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic, less responsive one.”
The Lyme Disease Association, based in New Jersey, has said doctors and scientists are not on the same page when it comes to treatment of the disease.
The LDA is one of the many organizations that has advocated for those with Lyme disease. In 2001, the LDA released an 182-page report titled “Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines.”
Because of the controversy surrounding how to diagnose Lyme disease, Lyme-literate doctors are hard to find, according to several online sources, and often keep a low profile because their treatment does not follow the CDC’s recommendations.
Wedd said she believes part of the controversy is that Lyme disease affects each person differently.
“The bacteria itself is shaped like a spiral, so it can literally dig into any tissue, any body system, and that’s why so many different people are affected differently,” she said. “The basics for Lyme are joint pain, fatigue, memory loss — that’s a big problem for many people. For me, it’s the fatigue, the pain in my joints. I have heart issues that relate to Lyme. I also have some of the neurological manifestations of Lyme disease — the memory loss, the trouble thinking. Many people refer to it as brain fog because you’re walking around in a fog trying to remember things or do things like putting milk in cabinets or driving to the wrong place. It’s a very scary disease that literally affects every part of your body.”
Diagnosis and treatments
One of the problems with Lyme disease is that there is not much faith in the initial diagnostic test. In May, Maryland Gov. Larry Hogan signed the first Lyme disease law for the state, titled “Lyme Disease — Laboratory Test — Required Notice.” The law makes it mandatory for laboratories and health care providers that draw blood for the Lyme disease test to give patients a written statement that explains that Lyme disease testing can be problematic. The law shines a light on the fact that a negative test result from the test doesn’t necessarily mean a person isn’t carrying the disease and that most likely, if symptoms continue, they will have to be retested.
“People are getting false negatives and they think that’s it for them, that they don’t have Lyme disease,” Wedd said. “Hogan’s bill says that they have to tell patients that they don’t necessarily have Lyme disease, but they could potentially have it. I think that has validated it.”
Wedd said the bill helps because tick bites also carry more than Lyme disease.
“When I was first tested again for Lyme, after seeing the Lyme doctor, he also tested me for other co-infections. I ended up contracting three other infections, as well as a parasite,” she said. “For me, personally, it’s multiple antibiotics, an antimalarial to combat the parasite, and then probiotics to support the antibiotics that I’m taking, and then the supplements.”
She also has regular hyperbaric oxygen treatments.
“So I essentially spend two hours in a chamber with a high concentration of oxygen, breathing that in to help push the oxygen into my bloodstream to promote healing,” she said. “The parasite that I have also attacks red blood cells. I’m hoping we’ll see an affect of that with killing off the parasites, on top of the antibiotics. A lot of people try to get intravenous antibiotics because that’s been shown in research studies to be beneficial. Unfortunately, health insurances do not cover intravenous treatments in the state of Maryland, or most states, actually. That is like a distant treatment option for me.”
Massachusetts, which is one of the 14 states from which 96 percent of confirmed Lyme disease cases hail, has already embraced the use of intravenous antibiotics as a treatment. On Aug. 1, the Massachusetts Senate voted 37-1 to override Gov. Charlie Baker’s veto of a bill that required health-insurance companies to cover the cost of intravenous antibiotics used by long-term Lyme disease patients. Rhode Island and Connecticut already passed similar bills.
“A lot of my friends who live in Massachusetts are extremely ecstatic because they’ve gone decades without proper treatment, and now they have a glimmer of hope,” Wedd said. “Ideally, I would like to see that in Maryland, and actually across the nation, because Lyme is in every state, unfortunately.”
In 2015, New Jersey passed HR 6, which helped establish an Interagency Lyme and Tick-Borne Disease Working Group that was to monitor federal activity on Lyme and provide recommendations to guide Lyme disease research and treatment programs.
The monetary price of Lyme disease
Lyme disease is an expensive disease to treat, even with insurance.
A 2015 study by the Johns Hopkins Bloomberg School of Public Health found “that a prolonged illness associated with the disease in some patients is more widespread and serious than previously understood.”
The February 2015 report stated that “Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year — or nearly $3,000 per patient on average — in return doctor visits and testing, likely to investigate the cause of some patients’ lingering symptoms of fatigue, musculoskeletal pain and memory problems.”
That cost, Johns Hopkins reported, was after patients received the recommended CDC dose of antibiotics.
The study, in which findings were reported on PLOS One online on Feb. 4, 2015, was from data collected from about 47 million people who were enrolled in a wide range of commercial health insurance plans in the United States between 2006 and 2010.
Researchers analyzed 52,795 cases of Lyme disease patients younger than 65 who were treated with antibiotics within 30 days of a Lyme disease test order and/or diagnosis. That was compared to nearly 264,000 other people with no evidence of Lyme disease exposure.
“The researchers found that, on average, people with Lyme disease cost the system $2,968 more than matched controls,” Johns Hopkins reported. “They had 87 percent more visits to the doctor and 71 percent more visits to the emergency room within the year following diagnosis. Those with Lyme disease were nearly five times more likely to have any PTLDS-related diagnosis — fatigue, nerve pain, joint pain, cognitive troubles — within that year, and were 5.5 times more likely to have a diagnosis of debility and excessive fatigue.”
Wedd is one of those who has to face the rising cost of dealing with the disease.
Insurance is currently covering all her oral antibiotics. “It will not cover my hyperbaric treatments, and it will not cover my intravenous treatments,” Wedd said. “If I do get to that point. It costs upward of $20,000 to $50,000 a year for people to pay out of pocket for this disease. There have been people a lot sicker or have multiple members in their family who have been impacted by Lyme disease and other illnesses, and they’re taking out second mortgages on their homes. I know there are people who have hundreds of thousands in treatments. It’s different based on your diagnosis.”
The cost of her disease was putting a strain on the Wedds’ budget. Last month, they decided that she would have to stop treatment.
“I spent eight years trying to maintain the disease because I couldn’t afford the treatment itself. If you don’t receive treatment, it can spread and you can develop Lyme meningitis or Lyme carditis, which can cause a sudden cardiac death,” she said. “So I dealt with as many symptoms as possible and as many immune systems as possible. And it just became too difficult to deal with the brain fog and the trouble thinking and all the pain. I was able to see a specialist and was hoping to continue with the treatment, but I ran out of money, unfortunately, because it is so expensive. We’re going to put everything on hold again, like we did for the last decade almost.”
After posting a note on Facebook saying she would be forced to stop treatments, a friend immediately set up a GoFundMe page. Then others in the community rallied to pull funds together for her.
“Gratefully, some individuals in the community and who I care deeply about were able to put together money so I was able to continue with this stage of my treatment,” she said.
However, she will still have to postpone the intravenous antibiotics because they will cost $20,000 to $50,000.
An advocate for herself and others
Wedd said she wanted to share her story simply to educate others about Lyme disease. But, she said, she knows others in Washington County who have been diagnosed with the disease.
“Unfortunately, I am not the only one impacted by Lyme disease in Washington County,” she said. “There are lots of people. And it’s very tough for them to pay for it out of pocket. “
According to the website TickChek.com, which uses data gathered by the CDC, there have been a total of 542 cases since 1992 in Washington County. Between 2007 and 2011, there were 324 newly diagnosed cases in the county.
“Due to the fact that the CDC’s data only represents confirmed cases, the actual quantity of Lyme disease cases may be far greater. We estimate a total of 4,336 true cases of Lyme disease in Washington County,” the site says.
That’s why Wedd is helping with a fundraiser on Monday, Aug. 8, at SkyZone in Hagerstown to support the Byrd family. Simone Byrd was diagnosed with the disease. She, her husband and her two children have to be tested, but need to raise funds in order to do so. The event, called Jump for the Byrds, is from 10 a.m. to 8 p.m. at the site.
It’s because of the Byrds and others like them that Wedd wants more people to know about the disease.
“Part of the problem is that people don’t understand the gravity of the nature of this disease and know how bad it is. I hope people can take from this a little bit more knowledge and prevent contracting Lyme disease themselves,” she said. “If they take a tick off, they definitely need to keep the tick. Keep it in a bag so they can send it in for testing. If they develop a bull’s-eye rash, take a photo of the rash so you can see if it expands. I also recommend keeping track of the symptoms you would develop after the bite. And do research on your own. There’s a lot of controversy on both sides. The better educated you are, the better you are at fighting this disease.”
Wedd said she has good days and bad days, and every day is different.
She is grateful that three years ago she was hired as the director of operations for Discovery Station in downtown Hagerstown, which allows her to share her love of science with children.
“It’s a learning curve. Everything changes from day to day, and you have to be grateful for what you have,” she said.