The Devastation Lyme Disease Inflicts on the Uninformed

It's hard to imagine a group of people who know they're sick, but aren't able to get tested or get proper treatment for what's causing their bodies so much physical pain and discomfort. They see a doctor after doctor and are told that they have allergies, the flu, or it's all in their heads, and that it can't possibly be what they're claiming. For months or even years, they are referred to various specialists before finally receiving a diagnosis for the illness they have been claiming for so long. That small window of time when we might have been able to avert potentially life-threatening medical consequences has passed. Doctors can only do damage control at this point because the disease has already wreaked havoc on their bodies. They are unable to work as a result of their illness, and at the same time, they are incurring enormous medical debt. Sadly, this is how many people with Lyme disease end up. Patients with Lyme disease are unable to secure medical treatment, suffer from a poor quality of life, and face severe financial hardships as a result of their disease. As defined by the Merriam-Webster dictionary as "an inflammatory disease" ("Lyme Disease"), caused by bacteria transmitted by ticks, Lyme disease first manifests as an itchy rash followed by a pounding headache, fever, and chills. About 300,000 people in the United States are diagnosed with Lyme disease each year, according to preliminary estimates from the Centers for Disease Control and Prevention (CDC). This alone should be a cause for alarm. According to a report in U.S. News and World Report from 2013, the Northeastern and Midwest regions of the United States account for 96% of all reported cases of Lyme disease ("U.S. Lyme Disease"). Sadly, this problem is not limited to these regions. People across the United States have been diagnosed with Lyme disease, but those infected in the southern part of the country face a particularly difficult road to diagnosis and treatment. One of Cynthia Fry's questions was about the difficulty she had in getting her son Robert Nathanial Fry, who had Lyme disease, diagnosed after he was bitten. Cynthia Fry is a Nashville resident. She says, "He was bitten while kayaking in Franklin, Tennessee in May of 2006. He was ultimately diagnosed with Lyme disease after two years and 38 doctors, including two visits out of state." In addition, she notes that the majority of the doctors they saw told them that his symptoms were most likely caused by something else rather than Lyme disease, because the condition does not exist in this part of the country. Many other people's tales are similar to hers in that they struggle to get diagnosed and treated. Because of rules issued by the Infectious Disease Society of America, it is difficult to secure treatment for Lyme disease (IDSA). The International Lyme and Associated Diseases Society (ILADDS) has held numerous hearings to analyze and amend these rules (ILADS). With regard to Lyme disease, two competing camps have arisen throughout the last decade, as shown in the film Under Our Skin, which examines this dispute and their respective stances. The 2006 IDSA Lyme guidelines were written by a committee of 14 academic researchers. As a result, they claim that Lyme disease is 'difficult to catch and easy to cure' because the illness is infrequent, quickly identified, and curable with two to four weeks of antibiotic treatment. This group asserts that Borrilia burgdorferi, a Lyme spirochetal bacteria, is rarely, if ever, the cause of chronic Lyme disease. ILADS, an organization of community-based physicians, represents the other side. To them, Lyme disease is not rare and tick bites often go unnoticed, in part because commercial laboratory testing for Lyme disease is inaccuracy.

The two groups have been arguing about the definition of Lyme disease for many years. As the number of people with Lyme disease has risen in recent years, the IDSA has come under increased scrutiny from the general public. In July of 2009, a panel of the IDSA listened to the ILADS group's proposal to alter the definition and treatment of Lyme disease. The IDSA's final decision was broadly consistent with their first position. Despite the fact that the IDSA only provides guidelines and not actual rules, many doctors and insurance companies follow their recommendations. This is a contentious issue. As a result, either their doctors refuse to provide therapy for these patients or their insurance plans refuse to pay for it because of these guidelines. Antibiotics at high doses are prescribed for a two-week period after the bite and diagnosis to put the disease into remission before it has a chance to become entrenched in the body. It's far more difficult to limit and control the disease if this window isn't taken advantage of, and the health repercussions can be disastrous.

Chronic Lyme sufferers have a poor quality of life because of the debilitating impact it has on the body.. Because they are unable to work due to their illness, many of these folks find themselves out of a job and forced to apply for disability benefits. Approximately nineteen days out of every month, Lyme disease-related exhaustion, sleep problems, joint pains, muscle aches, and mental health issues impede people's ability to concentrate and think clearly, according to an article by Lymedisease.org writer Loraine Johnson.

Cynthia Fry says her son had to leave out of graduate school because of frequent seizures, neurological issues, and terrible pain after he was afflicted with Lyme disease. He couldn't get out of bed most days and had to rely on a walker or wheelchair and oxygen to get around. In some cases, "we'd repeat a conversation within 10 minutes of having it," he said. There are many stories like this one on any Lyme discussion board or blog, and sometimes much worse, of people who are unable to move or function due of serious neurological diseases that they have. In addition to this deplorable way of living, the unfortunate guy is drowning in debt.

With the high expense of medical procedures for patients, these costs might be substantial. Lyme disease sufferers frequently find themselves in debt because of the ongoing medical care and treatments they require to be alive (as well as the fact that they are unable to work) in order to pay for it. For chronic Lyme patients, insurance companies may deny payment of specific treatments because of current guidelines issued by the International Society for Diagnosis and Therapy of Infections (ISDA) about treatment kind and duration. The cost of these treatments is passed on to patients because insurance companies refuse to cover them. Medical procedures, therapies, visits to the ER, prescriptions, medical equipment, and drugs cost between $30,000 and $60,000 every year for Fry. She believes that she spent close to $250,000 attempting to get her son Nathan well during the course of his illness. This is not an uncommon event for folks with persistent Lyme disease, so don't discount it. In the documentary Under Our Skin, the director tracked the spending habits of chronic Lyme disease patients as they went about their regular lives. Figures in excess of a million dollars out of pocket were the most common. United States citizens have a median household income of $53,046 according to a 2012 study from the United States Census Bureau ("USA Quick Facts"). Having Lyme disease can have a substantial and severe financial impact on an individual and their family.

Sadly, many people are aware of the terrible consequences of Lyme disease and the medical community's colossal failings. It's Cynthia Fry who falls into the latter category. Her son Robert Nathanial Fry died six days after his birthday on June 3, 2012, from complications of Lyme disease following a six-year struggle.. He was 31 years old. It's time to take action and raise public awareness about chronic Lyme illness, which is supported by numerous personal accounts as well as solid scientific evidence. There has to be more study into the prevention and treatment of chronic Lyme disease in the Southern medical community, as well as education on the physical impacts of Lyme and recognized treatments that can aid their patients. People's experiences with Lyme disease must be heard in order to improve policies relating to its detection, treatment, and prevention. An urgent need exists to fill the information gap regarding persistent Lyme disease.