Delays in diagnosis and misdiagnosis are common problems with Lyme disease, according to a nationwide survey published in May by LymeDisease.org.
Of 6,104 patients who responded to a 2015 survey, 61% said it took more than two years to receive a correct diagnosis. Only 21% reported being correctly diagnosed within six months of the onset of symptoms, the report showed. Almost half of respondents said their Lyme tests were delayed or denied because their physicians said the disease was not in their area.
Half reported being ill for more than 10 years, and 73% said they rated their health as fair or poor.
“Prompt diagnosis and rapid treatment of Lyme disease can prevent long-term complications,” San Francisco physician and tick-borne disease expert Raphael Stricker, MD, said in a news release. “When diagnosis is delayed, patients miss out on early treatment. The results can be devastating.”
Unreliable lab testing, shown to miss more than 50% of cases, and widespread misunderstanding of where Lyme can be contracted are key problems, according to researchers. Lyme disease can be contracted in all 50 states and more than 60 foreign countries, according to the release.
“I got passed around from specialist to specialist,” a survey respondent commented. “Every single one said that my symptoms sounded like Lyme disease, but they wouldn’t test because they said there is no Lyme in Utah.”
Lyme also imitates other diseases, Lorraine Johnson, CEO of LymeDisease.org, said in the release.
Respondents reported misdiagnoses of mood disorders (59%); chronic fatigue syndrome (55%); and fibromyalgia (49%). When people are misdiagnosed, they miss out on appropriate Lyme treatment and instead receive medications for conditions they don’t have, according to Johnson.
“Early diagnosis and treatment is an achievable goal that can prevent the disease from becoming chronic,” Johnson said in the release. “One respondent stated, ‘It’s sad to see people nonfunctional from tick-borne illnesses because they couldn’t get proper treatment from the onset of symptoms when disabilities could have been avoided.’”
The CDC reports 300,000 cases of Lyme disease each year, 25% of which are children.
The financial impact can be devastating, with 42% of patients with chronic Lyme disease reporting they had to quit work or cut back on hours due to the illness.
Patients who reported receiving disability made up 17% of participants, and 20% reported being on disability at some point from private insurance, or state, federal or other public agencies due to Lyme disease.
More than 90% of those patients regarded it as critically important to give patients consistent with Lyme disease symptoms the option to be tested even in nonendemic areas.
“This disease has cost me my life, my finances, my ability to contribute to society,” said one 35-year-old female survey respondent.
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