Reliable Testing for Lyme Disease By Paula Jackson Jones I
’m a huge proponent that you need to see the right person for the right job. In order to get correct service or informa-
tion, you need to seek out someone who has knowledge and experience with the subject matter at hand, like Lyme and Tick- borne disease. If you seek out a medical provider who does not have a lot of experi- ence, you will not get the best medical attention, proper diagnosis or treatment. You might get lucky and get a positive blood test immediately but if not, if your test comes back negative and your medical provider does not encourage you to come back in 2-3 weeks for additional blood work, it is very probable that you, like so many others, will fall between the crack of a broken system.
And here is why.
The federal Centers for Disease Control (CDC) Chief of Epidemiology and Surveil- lance for CDC’s Lyme Disease program, Paul Mead, MD, MPH, in an August 2013 press release, made the following state- ment: “We know that routine surveillance only is part of the picture and that the true number of illness is much greater”. At that time, more than 30,000 new cases were
reported to the CDC each year, but they go on to further state in that same press release that “new estimates suggest that the total number of people diagnosed with Lyme Disease is roughly ten times higher than the yearly reported number.” Mead goes on to say, “This new preliminary estimate confirms that Lyme Disease is a tremendous public health problem in the U.S. and clearly highlights the urgent need for prevention.”
As a member of Maine’s CDC Vector-
borne Workgroup, we meet quarterly to report on and discuss, among other things, new cases of tick-borne diseases. The cases are entered into the state database based on the following categories: [C] Confirmed, [N] Not a case, [P] Probable and [S] Suspect. Whenever an article is written to release publicly the number of new cases, only confirmed cases are counted. Well, I ask, “What is being done about the probable or suspect cases?” because again, who you see matters.
Here is a comparison of the data (Spring-Summer-Fall) reported and entered into the State of Maine’s database, with regards to tick-borne disease [for the sake
28 ELM™ Maine - November/December 2018
of time and space, I’ll only report on Lyme, Anaplasmosis and Babesia] (see page 29)
So, what do we know about Lyme Disease?
We know that the blood test used by most primary care physicians is not as reli- able as we would like it. In fact, the State of Maine has a law, LD597 An Act to Inform Persons of the Options for the Treatment of Lyme Disease, which doctors are supposed to inform their patients on the difficulty in diagnosing and treating Lyme Disease.
We know that not every patient is go- ing to produce right away the antibodies needed to be detected on said blood test.
We know that most primary care physi-
cians follow outdated Infectious Disease Society of American (IDSA) guidelines and protocols used for diagnosing and treating. These guidelines were removed from the National Guideline Clearinghouse database in February 2016 for being outdated.
We also know that those outdated guidelines clearly stated that adherence to guidelines was a suggestion only and not intended to replace physician knowledge and that each individual case is to be deter- mined between the doctor and the patient.
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