A few words on the Maine Lyme disease law, LD597, with MaineLyme.org President Constance Dickey
A couple of weeks ago in the state of Maine, Governor Paul LePage signed the bill, LD597, into law, which makes some changes concerning the state’s public health website and other provisions.
On the July 13 Dispatch Radio program, I had the opportunity to discuss the new law and other Lyme disease topics with Constance “Happy” Dickey, RN, President of MaineLyme.org.
Listen to the Podcast of the interview here (starts at the 23:20 mark).
One of the main provisions in the law requires the Maine Centers for Disease Control (CDC) to include on its publicly accessible website information about different alternatives for the treatment of Lyme disease.
Prior to the law, only the treatment guidelines from the Infectious Diseases Society of America (IDSA) were presented on the site. I asked Ms. Dickey to elaborate on this part of the law.
“The importance is that many patients are finding that they’re not recovering fully when treated with the IDSA guidelines,. Certainly when you get people early and treat them well and aggressively if they have a rash or the identify the tick bite, there’s often not much of a problem.
“But if people don’t see a rash or don’t know they had a tick bite and go a long time, months or years, before being diagnosed, the treatment options become difficult and complicated.
“And when people don’t get well with the IDSA guidelines, they find the guidelines with the ILADS, the International Lyme and Associated Diseases Society, work better for them.
“We were asking the Maine CDC to let people know there is a divide in the medical community, that there are two standards of care, and the patient should be able to confer with their physician and choose the standard that works for them.”
Another provision in the law requires the health care provider to give a patient a copy of the results of a Lyme disease test. In addition, the report must state that a negative test does not mean you don’t have Lyme disease. I asked Happy to elaborate on this part of the law.
Dickey says that this provision was not part of the original bill, in fact, it was originally found in a bill in Virginia, the first state in the country to do this. She goes on to say that the Lyme disease test is “not a very good test”, with only about 56 percent accuracy.
“There are a lot of things that can affect the results of the test, such as the timing of the test from when you got your tick bite, a history of antibiotics, steroids. It’s kind of a complicated thing and having a negative test doesn’t mean you don’t have Lyme,” according to Dickey.
“Virginia passed this bill so patients could continue to search for answers if they were ill and knew that they might have a tick-borne illness. Rep. Sanderson, from the HHS committee took the provision from the Virginia bill concerning lab reports and put in the Maine bill.
“As an addition to what we were asking for (including ILADS on the CDC website), they wanted physicians to tell patients that a negative test doe not mean they don’t have Lyme.”
Dickey says the Maine Medical Association fought hard against that language in the bill, which resulted in the final product.
I asked Happy to comment of the disagreements between the medical “establishment” and those outside the establishment, patients and advocates for example.
“Chronic Lyme is the issue”, Dickey states. There is little disagreement about early Lyme with few exceptions.
“Chronic Lyme and what continues to make people ill, after what is considered adequate or standard treatment by the IDSA, is the controversy.
“According to the IDSA folks, there is no longer continued infection. We really haven’t proven that. We haven’t proven what it is or what it isn’t.
“We know the longer we treat people, and if we treat patients efficaciously and effectively, they tend to get better.”
Dickey says according to the ILADS guidelines, when physicians don’t use “cookbook” medicine, they base their treatment on how a patient responds. She says using critical thinking and treatment on how a patients responds is a good thing.
“I don’t know why it’s not considered a good thing with Lyme”, Dickey adds.
MaineLyme is a non-profit organization whose mission is to decrease the prevalence of Lyme Disease and other tick-borne illnesses in the State of Maine through awareness, prevention, education and advocacy.