Investigation: Ten ALS clinician-scientists from
across the United States and Ireland have thus
far shared their experiences with Lyme disease
testing and treatment. All those weighing in use
standard testing for Lyme, as is recommended by
the American Academy of Neurology, the Center
for Disease Control and the Association of State
and Territorial Public Health Laboratory Directors
(7, 8). Only 3 clinician-scientists have routinely
tested most or all newly diagnosed patients with
ALS for Lyme, the other 7 test it only when there
are other symptoms or signs of possible Lyme, or
when a patient asks for it. In all, more than 4,000
newly diagnosed PALS have been tested for Lyme
by our group, with only 30 having had positive
Elisa and Western Blot tests. Thus, in our experience,
the incidence of positive Lyme disease
testing in PALS is less than 1%, which is similar
to the background incidence positive testing in
people without ALS across the United States (9).
Of the 30 PALS with positive Lyme tests, most
were treated with intravenous antibiotics effective
against Lyme for recommended durations (10),
and none was ever seen to improve.
Recommendation: There is no convincing evidence
that ALS can be caused by Lyme disease. PALS who
exhibit symptoms of co-morbid Lyme disease can
request standard, CDC-approved testing for Lyme
from their neurologist, with the understanding that
treatment of a positive Lyme test will not reverse
their ALS. Until Lyme literate clinics can provide
reasonable data supporting their claims, we do not
recommend that PALS pursue evaluation or treatment