“I hope this happens to no one else,” Alderson says emphatically.
Unfortunately, it has, and it will likely continue to, until medical professionals reach common ground on what exactly Lyme disease is.
Diagnosis: confusion
Those who claim that chronic Lyme exists — they are represented organizationally by the International Lyme and Associated Diseases Society (ILADS) — accuse their societal rivals, the more established IDSA, of having too narrow a view of Lyme disease.
For example, the IDSA claims that most “chronic Lyme” patients need a second opinion. They’ve been told they have Lyme disease because some of their symptoms are in line with the illness, but they don’t meet the official criteria for a diagnosis.
“As far as I can tell, there is no chronic Lyme disease,” Wormser says. “The majority of people who have been told they have chronic Lyme disease have no evidence of having ever had Lyme disease.”
He bases such an assertion on diagnostic criteria — lab testing, mostly — that chronic Lyme advocates label as inconclusive. It’s common knowledge among medical professionals that patients with a bull’s-eye rash won’t show up positive on a lab test (the antibodies won’t yet be present) — but that the rash is a sure sign of Lyme and antibiotics are in order. However, if there’s no rash, but Lyme symptoms are present, the mainstream medical establishment relies on a blood test.
Lyme specialists outside the mainstream, on the other hand, say that a person can test negative for Lyme but still have enough of the symptoms to warrant a diagnosis.
“Lots of times those who say [patients] don’t have Lyme are too closely looking for a blood test answer or a rash answer and they forget that you sometimes have to use clinical judgment,” says Dr. Daniel Cameron, an internist in New York and ILADS president.
Most medical professionals who support the idea of chronic Lyme disease stress the importance of clinical observation.
“It’s the patient’s story and the physical findings that let you put together a picture of someone’s illness, into a pattern that makes sense,” says Dr. Bea Szantyr, of Lincoln, who specializes in Lyme disease and who has treated Alderson. “When things don’t fit into the pattern, the tendency is to reject the observation rather than say, ‘hmmm, I need a new pattern.’”
A pattern, for example, that would allow for long-term antibiotic treatment. “We don’t even blink when someone says you need to treat [tuberculosis] with two or three antibiotics for nine months,” Szantyr says.
However, the IDSA sure bats an eye at the idea of putting so-called chronic Lyme patients on antibiotics for more than 14 days.
“There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease,” the hotly debated IDSA guidelines read. “Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (≥6 months) subjective symptoms after recommended treatment regimens for Lyme disease.” (The IDSA guidelines will undergo a review as a result of the Connecticut Attorney General calling foul on the original guideline development process; he suggested that panel members had conflicts of interest and predetermined biases.)
Such long-term antibiotic treatment can make people even sicker, Wormser warns. “You can’t appreciate how dangerous they are,” he says, echoing the argument of patients who have been treated by Lyme-literate doctors only to get more ill as a result of the high doses of antibiotics and sue. (A couple of these cases are outlined in Under Our Skin.)
Still, ILADS counters with this, from its own guidelines: “[S]ome patients present with disease recurrence after the resolution of their initial Lyme disease symptoms. This is consistent with incomplete antibiotic therapy. Although the optimal time to discontinue antibiotics is unknown, it appears to be dependent on the extent of [the symptoms], the patient’s previous response to antibiotics, and the overall response to therapy. Rather than an arbitrary...treatment course, the patient’s clinical response should guide duration of therapy.”
In other words, if a person takes two weeks of the commonly prescribed antibiotic Zithromax but still feels extremely sick, doctors shouldn’t rule out additional antibiotics.
Where does all this leave Hazel Alderson? Still struggling to find treatment, and to pay for it, knowing that the medical establishment doesn’t agree on what’s wrong with her, or how to fix it.
“Perhaps the area where we can agree is around the idea that this is a potentially preventable infectious disease,” Szantyr says. “If we acknowledge the people who remain sick after the disease, I think we have a compelling public health issue — and that is, to prevent this illness.”
Deirdre Fulton can be reached at dfulton@thephoenix.com.
