Complicated illness makes for difficult diagnosis, treatment
Date posted: July 17, 2014
SHERIDAN — There are still a lot of unknowns when it comes to the evaluation and treatment of Lyme disease.
Just as was the case when doctors and scientists first discovered and attempted to treat diseases such as AIDS and cancer, the growing epidemic of Lyme disease is wrought with missing information especially in terms of public awareness.
“I was not taught anything in school and I think that is where a lot of our doctors are too,” Leslie Erwin said. Her daughter was diagnosed with the disease after numerous doctors visits. “We have to travel to Denver to see a specialist. I’m not bashing our local doctors, it’s just what they all are taught and you have to learn as you go as new diseases are discovered.”
What is it?
According to the Centers for Disease Control and Prevention, Lyme disease was first described in 1977 following the investigation of a cluster of arthritis cases among children living near Lyme, Connecticut.
Further studies indicated that the arthritis was actually a late manifestation of a multisystem, tick-transmitted disease.
Multisystem diseases are those that regularly manifest without involvement of a common single system but rather with major involvement of several systems.
Like Syphilis in the 19th century, Lyme disease has been called the “Great Imitator” and is commonly misdiagnosed as a variety of rheumatologic and neurological conditions based on how it presents itself including Chronic Fatigue Syndrome, Fibromyalgia, Lou Gehrig’s Disease, Multiple Scleroses, rheumatoid arthritis and others.
In the short 37 years since it’s discovery, more than 100 strains of the virus have been discovered in the United States and more than 300 worldwide.
Laboratory diagnosis of the disease involves a two-tier system requiring positive ELISA and western blot tests.
The Enzyme-Linked Immunosorbent Assay is a commonly used laboratory test to detect antibodies in the blood and is also the test used to identify HIV. As such, Lyme disease can actually cause a person who is not Human Immunodeficiency Virus positive to receive a false positive diagnosis.
However, the International Lyme and Associated Diseases Society states that treatment decisions should not be based routinely or exclusively on laboratory findings as the tests in use lack sensitivity and leave a significant number of individuals with Lyme disease undiagnosed and untreated.
Additionally, a common public misconception is that if you do not have the “bullseye rash” following a tick bite you do not have Lyme disease. However, the rash may be absent in more than half of cases of Lyme disease and fewer than 50 percent of all Lyme disease patients even recall a tick bite.
Frustrating diagnoses process
Erwin’s daughter, Sarah, of Sheridan can speak to the unreliability of the current testing systems including visual diagnosis as she is living with chronic Lyme disease after multiple failed diagnoses. Erwin said though her daughter visited doctors sick enough to die, the first two ELISA tests came up negative, she never saw a tick and she never had a rash.
Although no well-designed studies have been carried out, according to ILADS the available data supports use of antibiotics to prevent chronic Lyme disease when administered within two weeks of contracting the disease.
“Elsewhere in the world they will treat based on symptoms alone where they don’t have to have a confirmed diagnosis. A lot of experts are saying that two weeks of antibiotics and the issues that come from overuse of them if the patient is not infected are much less dangerous than living with Lyme,” Erwin said. “It’s an ongoing study and far from cut and dry but we have to have awareness and, in my opinion, if I were to take a child in for a tick bite I would give them the antibiotics immediately just in case.”
The Erwin family cannot identify where and when Sarah Erwin contracted the disease though they can guess her highest risk was when she worked for the U.S Forest Service in Medicine Bow.
Her first serious symptoms manifested as pancreatitis a year before her Lyme diagnosis, which finally came in March 2013 in Boulder, Colorado.
Today, the Erwins live in Sheridan. Leslie Erwin helps her daughter with daily struggles including vertigo, coordination issues and neurological struggles including walking and talking.
Sarah Erwin also has three of the co-infections that often accompany the bacteria that causes Lyme disease: Babesia, Bartonella and Rickettsia — which is also known as Rocky Mountain spotted fever.
The various symptoms, the variety of bodily systems that can be affected and the symbiotic relationship of co-infections compounding the disease and symptoms make the study of Lyme disease complicated.
Medical, insurance complications
Another issue Erwin and her family have had to overcome is that of medical insurance.
Since many of the symptoms of Lyme disease and the co-infections that accompany them can be considered separate diseases, the only approved expense for the treatment of Lyme disease in many cases is the initial antibiotic; subsequent treatments are not covered under Sarah Erwin’s Blue Cross Blue Shield plan.
As a result, the Erwins have spent more than $120,000 out their pockets over the past three years to get their daughter the treatments she needs.
“Our story is not exceptional, it seems pretty typically from what we’ve seen,” Leslie Erwin said. “There are just a lot of mind-sets that need to change and the best thing we can do is make the public aware.”
Lyme disease facts
• Each year, approximately 30,000 cases of Lyme disease are reported to the CDC by state health departments but it is commonly recognized that this number does not reflect every case of Lyme disease that occurs in the United States every year due to inconsistent diagnosis and unreliable testing. Many physicians believe the number is being under reported by at least 10,000 cases annually or more.
• Almost two-thirds of recently diagnosed Lyme disease patients are considered chronic.
• Chronic Lyme disease is characterized by persistent symptoms including fatigue, cognitive dysfunction, headaches, sleep disturbance, cardiac malfunctions, musculoskeletal problems, cardiomyopathy, peripheral neuropathy and other neurologic dysfunctions.
Need to know more?
• Tick-Borne Disease Alliance formerly known as the Turn the Corner Foundation which can be seen at www.tbdalliance.org
• www.lymedisease.org and www.cdc.gov.