• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

British Columbia Public Health Publication denigrates "alternative Lyme testing"

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I only have access to the abstract. The final line of the abstract appears to have no logical connection to the bulk of the discussion.

This journal (Clinical Infectious Diseases) is the IDSA professional journal.

The conclusion states simply:

"Conclusions. In British Columbia, a setting with low Lyme disease incidence, ADCLS patients have a similar phenotype to that of CFS patients. Disagreement between alternative and reference laboratory Lyme testing results in this setting is most likely explained by false-positive results from the alternative laboratory."​

Their primary point seems to be that CFS and a new entity they term "Alternatively Diagnosed Chronic Lyme Disease" are indistinguishable. Therefore, they conclude that "Alternative laboratories" are producing false positives, as "No ADCLS patient was confirmed as having positive Lyme serology by reference laboratory testing." 25 of the 26 "ADCLS" patients were diagnosed by one "alternative laboratory" (presumably Igenex).

There is no mention in the abstract of comparison of "non-alternatively diagnosed" chronic Lyme patients (people who test CDC positive on whatever BC considers a "reference lab") with CFS patients and controls, which I would think would be critical to making the point that these so-called "alternative diagnoses" are bogus.

The main problem, of course, is assuming that the "reference lab" test is some kind of gold standard with a high degree of sensitivity and specificity, rather than a low sensitivity and high specificity (high false negative rate, low false positive rate).

http://cid.oxfordjournals.org/content/61/7/1084.short?rss=1


Lyme Disease Diagnosed by Alternative Methods: A Phenotype Similar to That of Chronic Fatigue Syndrome
  1. David M. Patrick1,2,
  2. Ruth R. Miller1,
  3. Jennifer L. Gardy1,2,
  4. Shoshana M. Parker3,
  5. Muhammad G. Morshed4,5,
  6. Theodore S. Steiner6,
  7. Joel Singer1,3,
  8. Kam Shojania6, and
  9. Patrick Tang4,5
  10. for the Complex Chronic Disease Study Group
-Author Affiliations
  1. 1School of Population and Public Health, University of British Columbia
  2. 2British Columbia Centre for Disease Control
  3. 3Centre for Health Evaluation and Outcome Sciences
  4. 4Department of Pathology and Laboratory Medicine, University of British Columbia
  5. 5British Columbia Public Health Microbiology and Reference Laboratory
  6. 6Department of Medicine, University of British Columbia, Vancouver, Canada
  1. Correspondence: David M. Patrick, MD, MHSc, UBC School of Population and Public Health, 2206 East Mall, Vancouver, BC V6T 1Z3, Canada david.patrick@ubc.ca).
Abstract
Background. A subset of patients reporting a diagnosis of Lyme disease can be described as having alternatively diagnosed chronic Lyme syndrome (ADCLS), in which diagnosis is based on laboratory results from a nonreference Lyme specialty laboratory using in-house criteria. Patients with ADCLS report symptoms similar to those reported by patients with chronic fatigue syndrome (CFS).

Methods. We performed a case-control study comparing patients with ADCLS and CFS to each other and to both healthy controls and controls with systemic lupus erythematosus (SLE). Subjects completed a history, physical exam, screening laboratory tests, 7 functional scales, reference serology for Lyme disease using Centers for Disease Control and Prevention criteria, reference serology for other tick-associated pathogens, and cytokine expression studies.

Results. The study enrolled 13 patients with ADCLS (12 of whom were diagnosed by 1 alternative US laboratory), 25 patients with CFS, 25 matched healthy controls, and 11 SLE controls. Baseline clinical data and functional scales indicate significant disability among ADCLS and CFS patients and many important differences between these groups and controls, but no significant differences between each other. No ADCLS patient was confirmed as having positive Lyme serology by reference laboratory testing, and there was no difference in distribution of positive serology for other tick-transmitted pathogens or cytokine expression across the groups.

Conclusions. In British Columbia, a setting with low Lyme disease incidence, ADCLS patients have a similar phenotype to that of CFS patients. Disagreement between alternative and reference laboratory Lyme testing results in this setting is most likely explained by false-positive results from the alternative laboratory.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Not to mention that the sample is so small that would make this study anecdotal. I've read school term papers with more credibility than this.

This is nothing but an attack on the competition, those labs that do not follow the IDSA lies. I think it's interesting that as the IDSA and CDC mishandling of the Lyme epidemic is more evident and more exposed in the USA, they seem to have found a captive audience in Canada.
 

L'engle

moogle
Messages
3,219
Location
Canada
Lyme is "that of which we do not speak" in British Columbia. I gave up mentioning it to doctors after the basic lyme serology test came back negative. I had a phone consult with Dr. Murakami once (at no charge to me!) and he seemed a very conscientious and dedicated person. Unfortunately I couldn't follow through with any more lyme stuff in the system. Dr. Murakami even called back and left a message few weeks later to see if I'd had any luck. People who do good work are so often working against mainstream ideology.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Lyme is "that of which we do not speak" in British Columbia. I gave up mentioning it to doctors after the basic lyme serology test came back negative. I had a phone consult with Dr. Murakami once (at no charge to me!) and he seemed a very conscientious and dedicated person. Unfortunately I couldn't follow through with any more lyme stuff in the system. Dr. Murakami even called back and left a message few weeks later to see if I'd had any luck. People who do good work are so often working against mainstream ideology.
As bad as it is in the USA, having Lyme in Canada is even worse. I'm very aware of what's happening over there, and I'm dismayed at how getting sick with Lyme is almost criminalized. Doctors that treat it are being aggressively chased and reprimanded by the usual suspects. It seems like the IDSA has turned the Canadian health system response to Lyme into their utopia, the ultimate model of what their guidelines would naturally lead to.

It's like Orwellian principles applied to medicine!

How far would these people go to keep defending their flawed (and fraudulent) approach to Lyme?
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson

Hmm. Thanks. Sorry. I guess I missed it because I didn't know what "ADCLS" (?!) might be, so it didn't catch my eye. I spotted this when it popped up on "http://www.lymeneteurope.org/news/" on September 5. I usually review the "Latest ME/CFS Research" thread fairly regularly, but the "Lyme disease and confections" one more often these days, since I'm pursuing the Lyme angle. Was a good discussion, too, particularly Valentjin's analysis. These days it takes more energy than I have to pick apart cogently a paper like that. And, I've forgotten most of my statistics.