Science and Tech


Chronic Lyme Disease Is Common, But It Doesn't Officially Exist

Diagnoses are up. But they might not be totally accurate.
Posted at 2:19 PM, Oct 17, 2018

Chronic Lyme disease is a case study in how nothing is simple in medicine. Many experts say chronic Lyme disease is not Lyme disease at all. There’s no debate about the acute form. It is caused by a bacterium transmitted by the bite of a black-legged tick also known as a deer tick.

Symptoms range froma bull's-eye rash to flu-like feelings of fever, sore throat, chills and body aches. Some patients also complain of memory loss and mood changes. Sometimes, facial paralysis. Not all patients have all the symptoms. Treatment calls for 10 to 21 days of antibiotics. and the sooner the better after the bite.

Here's where Lyme disease gets complicated. The CDC estimates that 10 percent to 20 percent of patients treated for Lyme disease remain symptomatic. These patients have what is called post-treatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS)

It is recognized by Infectious Diseases Society of America (IDSA) and the CDC. 

But then there's chronic Lyme disease. The very name "chronic Lyme disease" is a point of contention. Lyme disease specifically refers to a diagnosed infection caused by a specific tick-borne bacterium. Typically, patients who believe they have "chronic Lyme disease" have no known history of being infected with the Lyme-disease-causing bacterium, otherwise they apparently would be diagnosed with PTLDS. 

Chronic Lyme disease symptoms are tricky, too. Many overlap with PTLDS symptoms, like chronic pain, fatigue, cognitive problems and behavioral changes. But the symptoms also overlap with a wide range of neurological and rheumatological diseases. Some patients have turned out to have osteoarthritis, rheumatoid arthritis and degenerative diseases of the spine. Some also have been diagnosed with multiple sclerosis, ALS, also known as Lou Gehrig’s disease, and dementia. Advocates argue that these various conditions are the long-term results of Lyme disease, but research casts doubt on that because these various diseases do not cluster in localities where Lyme disease appears. 

The debate is not a standoff between equal sides. The majority of the scientific community has rejected "chronic Lyme disease" as a meaningful diagnosis. At the same time, there is a minority of physicians who do accept it.There does seem to be agreement on this much: Many people who claim to have "chronic Lyme disease" do suffer from severe and debilitating symptoms. It is the cause of their pain that’s at issue — along with how to treat it.