Editor’s Note: David S. Bell, MD is a well-known doctor in the field of ME/CFS treatment and research. Though now retired, Bell was among the first physicians who cared for the group of ME/CFS patients that were part of the original cluster of outbreaks in the mid-1980s. In this interview, Bell uses his expertise to answer the commonly asked question, is ME/CFS really Lyme disease? We’re gateful for Bell’s vast knowledge on a complicated subject both at ProHealth and the ME/CFS community.
Is ME/CFS Really Lyme Disease?
ProHealth: Can Lyme disease result in permanent ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome), even if the bacteria is no longer detectable? Can the Borellia bacteria that causes Lyme disease also cause ME? Moreover, which is worse: severe ME symptoms, or severe Lyme Disease symptoms?
Dr. David S. Bell: These three questions all revolve around chronic Lyme disease and will be answered differently by every ME/CFS specialist you ask. It is a subject that I had thought about a great deal, and I am aware that is a great deal of contention in the opinions. But with the understanding that we do not know all the answers, I will put forth my opinion:
In 1986 we had, over a two-year period in Lyndonville, New York, a large group of children and adults who came down with what we are now calling ME/CFS, or perhaps SEID (systemic exertional intolerance disorder). Central to this outbreak was a group of children who suddenly became ill in October, 1985. Among their many symptoms was very prominent lymph node tenderness, and after consulting with the New York State Department of Health and the CDC, it was decided to biopsy the armpit lymph nodes in a group of these children. Although none of them had the characteristic Lyme disease rash, it was my thought that they could have Lyme disease, although the appearance of a cluster outbreak argued against this, as did the rare prevalence of Lyme disease in this area. The families signed the permissions, and I explained to the children what was to happen, and one day we performed an axillary (armpit) lymph node biopsy on all eight children.
The tissue was carefully handled and divided into portions to study as much as possible on them. The standard tests were all normal, and routine viral and bacterial cultures were negative. All samples were sent for silver staining, at that time, the “state of the art” to look for Lyme disease, and one lymph node came back positive. Further analysis on this positive sample was not done. Based on this positive, I treated the children with doxycycline which appeared to have a beneficial result. At a later time, a double blind study with doxycycline and placebo did not show benefits. To my regret, none of this was submitted for publication.
In the intervening years, I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism.
This brings us to the underlying infectious organism that causes ME/CFS. I had the good fortune to study persons with post Q fever debility syndrome under the guidance of Professor Barry Marmion when I delivered to him some raw milk I was suspicious of. He had been following abbatoir (slaughterhouse) workers with established Q fever who did not become well with the standard treatment. In 2004 the CDC and Australian government did a prospective study looking to see who became ill following infection with Q fever, Ross River virus (RRV) and Epstein-Barr virus (EBV) in a well-designed and carefully controlled study. One year after infection with one of these agents 6% developed CFS by the Fukuda criteria. Of the many remarkable things in this study was that 6% of those had EBV, 6% with RRV, and 6% with Q fever — three completely different organisms. To me, this meant that many infections could initiate the process of ME/CFS, including infection with the Lyme organism. That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs.
However, in my thinking, ME/CFS is defined by the symptoms, and not the initiating organism. If the disease turns out to be autoimmune, this makes very good sense. It is as if several people got splinters, would we call them different injuries if one person had a maple wood splinter and another oak?
So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. If this is true then the three questions above are easy to answer.
This article was first published on ProHealth.com on October 12, 2015 and was updated on February 18, 2020.
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David S. Bell, MD is a well-known doctor in the field of ME/CFS treatment and research. Though now retired, Bell was among the first physicians who cared for the group of ME/CFS patients that were part of the original cluster of outbreaks in the mid-1980s.
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6. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).