Book Review: Conquering Lyme Disease: Science Bridges the Great Divide by Brian A. Fallon & Jennifer Sotsky

https://www.nature.com/articles/d41586-017-08442-8

 

I hope the Lyme (and related)-community starts focusing more on donating/fund-raising for research. It should move the field on.

I have rarely seen talk about fund-raising events for research or even calls to donate to research (though I only dip in and out of fora).

 

Study by Brian A. Fallon

Clin Infect Dis. 2014 Dec 15;59(12):1705-10. doi: 10.1093/cid/ciu703. Epub 2014 Sep 2.


A comparison of lyme disease serologic test results from 4 laboratories in patients with persistent symptoms after antibiotic treatment.

Fallon BA1, Pavlicova M2, Coffino SW3, Brenner C4.

Author information

Abstract
BACKGROUND:
As the incidence of Lyme disease (LD) has increased, a number of "Lyme specialty laboratories" have emerged, claiming singular expertise in LD testing. We investigated the degree of interlaboratory variability of several LD serologic tests-whole cell sonicate (WCS) enzyme-linked immunosorbent assay (ELISA), immunoglobulin M (IgM) and immunoglobulin G (IgG) Western blots (WBs), and an ELISA based on the conserved sixth region of variable major protein-like sequence expressed (C6)-that were performed at 1 university laboratory, 1 commercial laboratory, and 2 laboratories that specialize in LD testing.

METHODS:
Serum samples from 37 patients with posttreatment Lyme syndrome, as well as 40 medically healthy controls without prior LD, were tested independently at the 4 laboratories.

RESULTS:
In general, there was little difference among the laboratories in the percentage of positive test results on the ELISAs and IgG WBs, although the number of discordant results was often high. When in-house criteria for positivity were used at the 2 specialty laboratories, specificity at 1 laboratory declined considerably on both the IgM and IgG WBs. The Centers for Disease Control and Prevention (CDC) 2-tiered criteria improved overall concordance. At the 2 laboratories that performed the C6 ELISA, the percentage of positive tests was comparable to that of the WCS ELISA while providing higher specificity. The IgM WB performed poorly in our patient population of individuals with later-stage illness, a result consistent with previous studies.

CONCLUSIONS:
Although there was surprisingly little difference among the laboratories in percentage of positive results on most assays using CDC criteria, interlaboratory variability was considerable and remains a problem in LD testing.

 

I am afraid I find this article surprisingly inadequate and even, in some cases, inaccurate (for instance, Steere reportedly thought in the late 70's Lyme was caused by a virus, not bacteria. Why? Because antibiotics failed to clear it in so many patients)

There are many charities and advocacies for Lyme, @Dolphin . Some were very recently instrumental in removing Wormser from the new Lyme Task force in the US. Others are playing an active role in heralding the lawsuit against principal authors of the IDSA Lyme Guidelines.

The parallels between patient communities in TBDs and ME/CFS are many and striking - at the very least, each is unflinching in the face of bias and misinformation emanating from both laymen and government agencies alike.