By: COURTNEY MORRISON, Staff Writer
When thinking about the month of May the first things that come to mind are Mother’s Day and warm weather. However, May is also Lyme Disease Awareness Month.
Lyme disease has been in the news a lot recently since Real Housewife of Beverly Hills cast member Yolanda Foster and pop star Avril Lavigne announced their diagnosis with the disease.
Despite all the media coverage there has not been a good explanation of what having Lyme disease actually means.
Lyme disease is a tick-borne illness. The disease is contracted when an infected tick burrows into its victim’s skin and releases the disease through its bite. A tick bite is the only way to get the disease and it is not contagious.
The Lyme bacteria is a “spirochete,” or spiral-shaped bacteria named Borrelia Burgdorferi. One would assume that most people would notice being bit by a tick, but the reality is fewer than 50 percent of patients with Lyme recall a tick bite.
Ticks are extremely small and hard to detect. These ticks can attach anywhere on the body sometimes leaving a bull’s-eye rash on the skin. One of the many problems in getting a diagnosis of Lyme disease is a majority of physicians think that the rash is a necessity to having Lyme. In actuality, fewer than 50 percent of patients ever get a rash.
Lyme disease is often called the great imitator since the spirochetes can weasel into every system in the body including the brain.
There are several stages to the disease starting with the localized early or acute stage. During the acute stage, the bull’s-eye red rash may appear and patients begin to experience achiness, headaches and flu-like symptoms.
Early Disseminated stage is second. Bacteria have begun to spread in this stage. Patients experience a wide array of symptoms such as stiff neck, facial paralysis, abnormal pulse, sore throat, severe fatigue, and a host of other symptoms.
After Early Disseminated stage is Late Stage Lyme. At this point patients have most likely developed arthritis, as well as serious neurological disorders. Symptoms in this stage include short-term memory loss, mental fog, disorientation, seizures, mood swings, dementia, and vision changes to name a few. The Lyme Research Alliance has a list of over 87 symptoms Lyme patients can have.
Chronic Lyme disease is last. Chronic Lyme is when the patient has had Lyme for an extended period of time or has received the allowed treatment and their symptoms have not resolved. According to the Center for Disease Control an estimated 20 percent of patients will have Lyme symptoms that persist after treatment.
Appropriate treatment is difficult to come by in some areas as Lyme disease is not recognized in several states in the U.S, Michigan included. Michigan is not considered to be a state with a risk of Lyme despite having a high deer population. Deer are the primary hosts for ticks. To put into perspective how difficult it is to find a “Lyme literate doctor,” only two doctors in Michigan specialize in Lyme disease treatment.
As well as not recognizing Lyme in some states, the CDC’s protocol for treating Lyme disease is a maximum of 30 days of intravenous antibiotics. Jamie Lynn, a Lyme disease patient, received 3-and-a-half months of antibiotic treatment and was still unable to be rid of the disease.
“I got sick with Lyme disease with two co-infections seven years ago,” said Lynn, who underwent a treatment that included 13 weeks of IV antibiotic therapy. “Because the doctors I visited first were not able to properly diagnose my disease, the Lyme was able to penetrate into my central nervous system. To rid my body of the Lyme, an option was to have a PICC, or an IV for antibiotics put into my arm for an extended period of time.”
The result of the CDC’s short treatment protocols is that 40 percent of patients have a relapse of their disease.
A substantial portion of patients have gone undiagnosed for years such as Jamie Lynn, partly due to the inaccurate testing available. The ELISA blood test used to diagnosis Lyme is only accurate 35% of the time.
It has taken Melissa Tranmer, a Georgia resident, 27 years to be diagnosed.
“I’ve had Lyme since I was eleven; I’m now 36 and just got diagnosed,” Tranmer said. “I’ve been told I had endometriosis, Fibromyalgia, Chronic Fatigue Syndrome, and more…When it kicked into turbo in 2012, I started gaining weight and ended up gaining 150 pounds. It has taken over every aspect of my life and I can no longer work.”
Patients like Tranmer are likely to experience long-term health problems from going undiagnosed for so long. Forty percent of Lyme patients end up with long term health problems even after their disease is gone.
The Lyme community is constantly looking to raise awareness to the disease and the guidelines preventing proper treatment. In March a couple of Lyme patients got together to start the #Lymediseasechallenge, similar to the ALS ice bucket challenge. Participants are asked to take a bite out of a lime, make their most sourpuss face and take a selfie. Then they are asked to post the selfie on social media, challenge three other people and either post a fact about Lyme or make a donation to the International Lyme and Associated Disease Society (ILADS).
Celebrities such as Erin Andrews, William Shatner, Gigi Haddad and Dr. Oz have participated in the challenge. The challenge will continue through Lyme disease awareness month with the hope of getting the word out on what Lyme is and the changes needed to better serve the Lyme community.
Lyme disease is the fastest growing vector-borne infectious disease in the U.S. and in order to curb the rate, education, detection, prevention, and awareness are key.