“There are other methods that are potentially used – a blood culture or [DNA test that] looks for the organism itself and not for the immune response,” he said. But “most of these [tests] are terrible in the setting of Lyme.”
Blood tests are not helpful in Lyme disease, according to Mead, because the Borrelia bacterium is a spirochete that quickly leaves the bloodstream and “burrows” into other parts of the body.
“The recommendation is if you have early signs of the disease, like a bull’s eye, the physician should order a test, but if it looks like Lyme, give them antibiotics,” said Mead.
Later, if arthritic or neurological symptoms persist, Mead said doctors should retest for antibodies, and if the tests are negative, consider other causes of disease.
“Certainly there is a lot of movement in terms using [the C6-based ELISA test] more broadly in the U.S.,” he said of the European test used to diagnose Bargfrede. “We are suggesting that as data becomes available to support that alternative, it would be a good possibility.”
“There is no question a subset of patients had genuine Lyme and will have persistent symptoms after treatment,” he added. “In that case, we have to figure out the best way to treat them. We can give them more antibiotics, but that is more harmful than good.”
Even though many patients and practitioners insist Lyme can be chronic, CDC scientists say they’re wrong.
“We rely on things that are tried and true,” Mead said. “If you are sick for years and come back with a negative test for Lyme disease, you have to open your mind that it might be something else.”
But many who claim to suffer from a chronic form of Lyme disease say doctors should not rely solely on positive test results, and point to the need for more research on reliable testing and innovative treatments.
“People are suffering terribly, trying to find a way to afford treatment and become a ‘patient’ of someone who actually knows how to help, while keeping a job and a roof overhead,” said Trisha McCleary, cofounder of Sturbridge Lyme Awareness of Massachusetts or SLAM. “People are being turned away from doctors and their diagnosis is being left up to testing known to be faulty and unreliable instead of clinically diagnosed.”
McCleary, 49, said she has battled Lyme disease symptoms for decades. As a teen, she said she had chronic muscle and joint pain and was diagnosed with fibromyalgia. Later, in 1996, she said doctors thought she had hypothyroidism.
In June 2006, she said her head “felt foggy and not right,” and she lost her ability to speak and move. Doctors sent her to a psychiatrist, she said.
By 2009, she said she found a “Lyme literate” neurologist who ordered IV antibiotics, probiotics and an “herbal protocol,” and for the first time, she said she “felt life coming back and knew I could and would fight for my life.”
Later, McCleary said her “lifesaver” doctor was “harassed” for not following standard medical guidelines, and she ended up without medication or a doctor who would continue to treat her for Lyme disease. She said her “struggle” continues and “the damage to my body is ongoing as it is for most chronic Lyme sufferers.”
As for Bargfrede, he said he lost six months of work until he finally was diagnosed with Lyme disease transmitted by a Spanish tick.
He said an American doctor believed he had Lyme but couldn’t prove it, and told him, “If you got sick in Europe, go back to Europe.” There, the C6-based ELISA test came back positive. But Bargfrede said that when he returned to the U.S., the same American doctor refused to give him the IV antibiotics prescribed by the German doctor, claiming he “didn’t believe the test.”
He alleges some doctors are fearful of bucking CDC recommendations.
“All the while, I can’t think straight and can hardly get out of bed,” he said. “I was fighting for my life and fighting with my doctor.”
Bargfrede said he tried the “natural path” and ended up in intensive care with kidney and liver failure after a practitioner prescribed an IV “silver” cure.
After several more doctors, he finally found one who prescribed intravenous antibiotics. And by April 2014, 10 months after his tick bite, Bargfrede said he could finally “think straight and I feel a lot better.”
“There’s is a huge problem,” he said. “There are those who legitimately have Lyme and don’t know what’s wrong and there are those who have all the symptoms in the book and think they must have Lyme.”
“On the one side doctors are called quacks and on the other side they are called incompetent clinicians,” he added. “I don’t care about the fight. I care about the patient.”