At least anecdotally, some long-distance drivers experience the type of virus reactivation that describes climates. In late October, seven months after contracting the coronavirus, Lauren Nichols developed shingles – a reactivation of the virus that causes chickenpox. The “out of this world” episode of searing nerve pain sent her to the emergency room. A lesion developed on the cornea of her left eye that threatened her vision. Antiviral drugs helped control her shingles. Nichols, an administrator of a Long Covid support group, told me that reactivation of Epstein-Barr, cytomegalovirus and other herpes viruses is happening in a small but significant percentage of long distance drivers on the site.
A similar argument about what drives chronic symptoms – persistent infection versus persistent inflammation from previous infection – plays an important role in the Lyme disease study. Some people infected with Borrelia burgdorferi, the tick-borne bacterium that causes Lyme, do not recover even after taking antibiotic treatment. Patients may refer to this condition as “chronic Lyme disease,” but doctors prefer to refer to it as “post-treatment Lyme disease syndrome” because they are unsure whether the infection is still present. As with ME / CFS research, the debate over the root cause of this post-Lyme disease has polarized the field for years.
There are other similarities as well. The Lyme problem is not recognized, but it is immense. It is estimated that 329,000 people become infected with B. burgdorferi each year. About 10 percent of people treated with antibiotics develop persistent symptoms, including fatigue, pain, and occasionally nervous system disorders such as dysautonomia – heart rate, blood pressure, and other basic body functions out of order. It seems to affect women more than men, it has long been dismissed as psychological and the long-term illness is often judged to be worse than the acute infection.
Like ME / CFS, post-Lyme syndrome does not have a biological marker that allows a specific diagnosis. The three non-mutually exclusive ideas about what causes long-term symptoms are roughly the same as for ME / CFS: a persistent infection (or maybe just debris from the Lyme spirochetes); an autoimmune disease or inflammatory dysfunction that is caused by the infection and that persists after the bacteria go away; or changes in the nervous system reflecting Jarred Younger’s idea of ”angry microglia” but described by Lyme researchers as “raising central nervous system awareness”. Perhaps the infection changes the way the brain functions in such a way that stimuli that were once easily bearable – pain, light, sound – become unbearable.
The parallels between ME / CFS and Lyme confirm the belief that many different infections – including Lyme spirochetes – can trigger long-term debilitating syndromes. It’s a lesson we as a society may have forgotten, said Allen Steere, a Lyme expert and rheumatologist at Harvard Medical School. “Now we have infected millions and it is becoming clear to people that this type of problem can follow.”
It’s a crazy prospect, but for a long time Covid may not be a single syndrome at all. It could, as seems to be the case with ME / CFS, be a series of problems linked in various ways to an initial trigger – in Covid’s case, the invasion of the human body by a virus believed to be it is originally native to bats. ME / CFS doctors and researchers have faced this frustrating complexity for years. It is an inevitable challenge in treating any condition, be it ME / CFS or Long Covid, whose diagnosis is based almost entirely on subjective reporting of symptoms. After all, there are many ways in which you can cause symptoms like fatigue, brain fog, and even dysautonomia. As Peter Rowe puts it, treating ME / CFS is like peeling an artichoke. “They are trying to remove treatable layers of problems and see what the essence is,” he told me.
In the case of ME / CFS, scientists have identified several more leaves of the proverbial artichoke – a lucky bag of treatable, somewhat opaque conditions that appear to be associated with it. One is mast cell activation syndrome, which can cause fatigue, pain, and problems with thinking and memory. An infection can sometimes trigger it. Another is small fiber neuropathy, a condition in which the body’s nerves misfire and can die, causing pain, fatigue, and disruption of basic body functions such as breathing. Infections can sometimes trigger it, and given the current description of Lang Covid symptoms, Anne Louise Oaklander, a pioneer in understanding this neuropathy, suspects it also occurs in long-distance drivers. “Small fiber neuropathy is usually treatable,” said Oaklander, “and in some cases curable.”
