Photo and text provided by Doug Fearn
On a June day in 1990 Doug Fearn went from being healthy and full of energy to experiencing days of low-grade fever and fatigue. His primary care doctor could not find anything wrong, and a test for Lyme disease was negative. He did not improve over the following week and was hospitalized for several days. Doug underwent many tests, including hourly blood draws, yet nothing was found. He was given a diagnosis of mononucleosis and discharged with lingering symptoms.
In retrospect, Doug realizes that he was exposed to Lyme disease and possibly other tick-borne diseases that day and now knows that his negative test result was meaningless because of the lack of sensitivity and specificity of the diagnostic tests used. Doug’s condition improved, but he was not one hundred percent recovered. Several years later, similar symptoms culminated in a bull's-eye rash, which is diagnostic for Lyme disease. The second time, he was much more ill, with a very high fever, intense headache, and profound fatigue, but the diagnosis was more clear and a month of antibiotics brought him back to ninety percent.
Since Doug lives in an endemic area with many deer and lots of deer ticks, he had collected articles on Lyme disease since the 1980s. After his second bout, he decided to learn all he could about the disease, which was not as easy to do then, as it is now with the internet. He soon started getting questions from friends and neighbors, who looked to him as a source of information on Lyme disease. Doug was glad to share what he had learned, but it was tiresome to cover the same information repeatedly, so he decided to write down what he knew, and partnered with a local Lyme disease support group to have it printed. He continued to learn from the many others that he met whose lives had been affected by tick-borne diseases. That was in 1999, and the booklet has been through seven editions, and has been requested by over 400,000 people.
In 2003, along with several other Lyme patients, Doug formed the Lyme Disease Association of Southeastern Pennsylvania (LDASEPA), Inc., a 501(c)(3) all-volunteer non-profit corporation. The goal was to help the people in their community learn about tick-borne diseases, how to prevent them, and to provide support during their struggle to regain their health. LDASEPA is an affiliate of the national Lyme Disease Association, which provides them with access to many resources and connections with other similar groups around the country.
The LDASEPA quickly realized that their strength was in education and they focused on educating the public and the medical community where they could. The LDASEPA holds monthly meetings that are free and open to all. They have an expert speaker at each meeting, who is often a physician or other healthcare professional, and they are present at many public events each year where they handout information and answer questions.
Early on, Doug was asked by various organizations to give talks on Lyme disease. This has expanded to about fifty such presentations each year. He has spoken at diverse venues from a steel mill to hospital grand rounds, but most of his talks are given to schools, private businesses, government employees, garden clubs, bird-watchers, service groups, church groups, libraries, and other Lyme support groups, as well as several classes of nursing students each year. Doug attends at least one medical conference on tick-borne diseases every year. It's hard work, and involves a lot of travel at his own expense, but to Doug it is very rewarding to have people tell him that the information he provided to them has saved their life.
As for Doug’s health, he is doing well, but he is well aware that there are those who struggle daily. He judges the effectiveness of his treatment by how much he can accomplish in a day, and right now he seems to be able to handle a heavy load. In 2016, Doug became a consumer peer reviewer for the Tick-Borne Disease Research Program. He finds this experience to be gratifying, knowing that he provides input from the patient perspective to identify the scientific research proposals that are most likely to improve patients’ chances of obtaining useful test results and better outcomes.
In his professional life, Doug designs and manufactures creative electronic equipment that helps singers and musicians achieve the best possible recorded sound. Over the years, he has been a recording studio owner, record producer, and occasionally involved in radio broadcasting. Being in business for himself all his life has afforded him the flexibility to give talks, speak with legislators, and help run a busy non-profit. Involved in tick-borne diseases for over twenty years, as a patient, caregiver, advocate, and educator, Doug is glad to have regained his health and will no doubt continue to tell his story and educate the public about Lyme disease so that he may help people avoid the suffering that he has seen.
Last updated Monday, May 22, 2017