HOW MANY LYME DISEASE PATIENTS DON’T MEET STRICT DIAGNOSTIC CRITERIA?
In a recent article published in Open Forum Infectious Disease, Kobayashi and colleagues suggest that Lyme disease is often mistakenly diagnosed as causing various illnesses, which has led to the unnecessary use of antibiotics. The authors conducted a retrospective study of patients with possible Lyme disease, who were referred to an infectious disease clinic in Maryland between 2000 and 2013. ¹
Kobayashi and colleagues concluded that nearly 3 out of 4 patients referred to the clinic did not have Lyme disease. They did not interview the referring doctor at Johns Hopkins University School of Medicine. Instead, they conducted a chart review.
However, to be included in the study, patients had to meet the Infectious Diseases Society of America’s (IDSA) guidelines or the Centers for Disease Control and Prevention’s (CDC) clinical and serological criteria.
The authors found that out of 1,261 patients, all but one were symptomatic when they presented to the clinic, with a median duration of complaints of 558 days, ranging from 1 day to 51 years.
“The 5 most commonly identified symptoms were arthralgia (71.3%), fatigue/malaise (66.8%), headache (42.1%), myalgia (40.8%), and sleep disturbance (34.3%),” writes Kobayashi.
Only a few patients had abnormal physical findings.
“The 5 most common abnormal physical findings were rash other than erythema migrans (6.6%), joint swelling (5.9%), tender points (3%), objective sensory abnormality (2.1%), and motor weakness (1.5%),” the authors explain.
The researchers did not report a number of clinical presentations that can occur in Lyme disease, including:
- Lyme encephalopathy 
- Lyme neuropathy 
- Neuropsychiatric Lyme disease 
- Pediatric neuropsychiatric disorders – PANS 
- Lyme carditis 
- Autonomic dysfunction – POTS 
- Post-treatment Lyme fatigue – Post-Lyme disease 
- Neuropathic pain 
- Persistent symptoms after Lyme disease 
- Lyme disease with co-infection e.g. Babesia 
It may be that many physicians do not recognize or document these types of manifestations, given that the authors didn’t mention any of these presentations.
Approximately 1 in 10 patients had a history of co-infections.
“Although 139 (11%) co-infections were diagnosed before evaluation at the infectious diseases clinic, none of these infections were confirmed or treated based upon the evaluations performed in this study,” writes Kobayashi.
“Of these 139 putative co-infections, 61 (44%) were said to be caused by Babesia microti or B. duncani, 40 (29%) by Epstein-Barr virus, 30 (22%) by Bartonella, 11 (8%) by Ehrlichia spp., and 32 (23%) were attributed to other infectious agents,” writes Kobayashi.
- Takaaki Kobayashi, Yvonne Higgins, Roger Samuels, Aurasch Moaven, Abanti Sanyal, Gayane Yenokyan, Paul M Lantos, Michael T Melia, Paul G Auwaerter, Misdiagnosis of Lyme Disease With Unnecessary Antimicrobial Treatment Characterizes Patients Referred to an Academic Infectious Diseases Clinic, Open Forum Infectious Diseases, Volume 6, Issue 7, July 2019.
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This article brings up very important points – many patients do not meet the stringent CDC diagnostic criteria to even be accepted into research studies much less be diagnosed with Lyme/MSIDS. For 40 years we’ve had blood serology that misses half of all cases as well as the fact many patients do not present with the “classic” EM rash but either have no rash at all or a rash that presents differently. https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/
You’d have to be blind to not see how patients are immediately set up for failure.
While they continue to shout about unnecessary antibiotics, most patients are denied care. Trust me when I say we all have much better things to do besides taking expensive, painful treatment!