Dr. David Patrick, Director of the School of Population and Public Health at University of British Columbia, Canada, wants to help “alternatively diagnosed” chronic Lyme patients. So he and his colleagues studied the issue.
The scientists found that all 13 chronic Lyme patients they looked at had no good evidence of having Lyme disease. They noticed striking similarities between chronic Lyme patients and Chronic Fatigue Syndrome patients.
Chronic Fatigue Syndrome is poorly understood and often includes Medically Unexplained Symptoms, which the UK NHS describe as follows:
Many people have persistent physical complaints, such as dizziness or pain, that don’t appear to be symptoms of a medical condition.
They are sometimes known as “medically unexplained symptoms” when they last for more than a few weeks, but doctors can’t find a problem with the body that may be the cause.
This doesn’t mean the symptoms are faked or “all in the head” – they’re real and can affect your ability to function properly.
Not understanding the cause can make them even more distressing and difficult to cope with.
In a comment on Patrick’s study, Dr. Alan Barbour noted that the phenomenon of Chronic Fatigue Syndrome being falsely blamed on Lyme disease has been seen since the late 1980s. He cited a 1990 study that found rampant false Lyme diagnoses and unnecessary antibiotics. The 1990 study concluded:
Anxiety about possible late manifestations of Lyme disease has made Lyme disease a “diagnosis of exclusion” in many endemic areas. Persistence of mild to moderate symptoms after adequate therapy and misdiagnosis of fibromyalgia and fatigue may incorrectly suggest persistence of infection, leading to further antibiotic therapy.
Attention to patient anxiety and increased awareness of these musculoskeletal problems after therapy should decrease unnecessary therapy of previously treated Lyme disease.
Dr. Barbour further commented:
Given the choice between a diagnosis of CFS or, in other cases, fibromyalgia, for which there are limited treatment options, and LD, for which antibiotic therapy may promise a cure, is it any wonder that the diagnosis of LD is as common as it is and that “Lyme specialty” laboratories stay in business and, for all I know, prosper? Certainly, the authors are justified in their view that “individuals diagnosed with [alternatively diagnosed chronic Lyme syndrome] deserve comprehensive workup and care.”
However, an important unanswered question of the study is whether the alternatively diagnosed chronic Lyme syndrome patients changed their beliefs about whether they had LD or not? The fact is there has been insufficient progress over more than 3 decades in understanding what is as much a psychosocial and cultural phenomenon as a biological one.
Dr. Patrick also appeared on Global News (see video above) and presented a useful illustration of how chronic Lyme can spread socially. Other ways chronic Lyme spreads is via quacks and credulous media coverage.
An analysis from Australia (where there is no endemic Lyme disease) revealed “Almost 10% of respondents self-diagnosed after being exposed to a media report of Australian Lyme disease.”
Resources by Dr. Patrick:
- Explaining the mysteries of Lyme disease
- Video and Slides from a longer presentation on Alternatively Diagnosed Chronic Lyme Syndrome at the Conference to develop a federal framework on Lyme disease
- Q&A Tick Talk: What you need to know about Lyme disease
- Lyme Disease Diagnosed by Alternative Methods: A Phenotype Similar to That of Chronic Fatigue Syndrome
- Lyme disease: How reliable are serologic results?
- Interview with Dr. David Patrick and a Window into Current ME/CFS Research at UBC
- Dr. Alan Barbour: “Lyme”: Chronic Fatigue Syndrome by Another Name?
- Dr. Harriet Hall: Does Everybody Have Chronic Lyme Disease? Does Anyone?
- LymeScience: More papers describing false Lyme diagnoses in CFS and fibromyalgia patients
- UK NHS: Medically Unexplained Symptoms
- Dr. Steven Novella: Is Fibromyalgia Real?
- Dr. Alison Lai: Patients need answers. Doctors don’t always have them.