(gentle music)
- Persistent symptoms in Lyme disease
and in the long haulers are remarkably similar.
There seems to be this trio of symptoms
that are linked and travel together
in both of these illnesses
and similarly in chronic fatigue syndrome
and even fibromyalgia.
And these three symptoms are very characteristic.
They include fatigue, and by fatigue I mean severe fatigue,
not just the mild fatigue of everyday living,
but kind of disabling fatigue.
The second symptom are in the cognitive symptom realm,
and those are memory problems,
difficulty focusing and multitasking.
And then the third type of symptoms are pain type symptoms,
involving either the musculoskeletal system
or sometimes the nerves,
but the pain type of symptoms.
It was striking when I first saw the display of the symptoms
in the COVID long haulers.
They were displayed on a graph
where each line in the graph was one of the symptoms,
and they formed kind of a pattern.
And when you take that pattern
in the COVID long haulers
and put it next to the pattern of the Lyme
persistent symptom group,
they're almost identical.
It almost makes like a butterfly
of symmetry of the distribution of the symptoms.
Again at the top are those core symptoms,
fatigue, cognitive symptoms, pain,
and they almost parallel each other exactly
in the two illnesses,
the COVID long haulers on one side,
the persistent Lyme group on the other side.
It's remarkable.
So there is a difference.
Lots of lung symptoms in the COVID patients
and then also the COVID long haulers,
so things like breathlessness and trouble breathing,
where in the Lyme disease group you don't see that
because the initial infection
doesn't really involve the lungs.
One of lessons that the long haul Lyme patients,
those with these prolonged persistent symptoms,
one of the lessons that the Lyme disease patients taught us
is that these patients are often misunderstood
and not heard.
Their illness really has a huge impact on their life.
We learned that in Lyme disease,
we're hoping the same thing doesn't happen
in the COVID long haulers.
In fact, Alison Rebman and I
from our research group published a letter
to the editor of Lancet, pointing out the similarities
in how the long hauler patients were not being believed
and how we shouldn't subject that on those patients.
'Cause we learned from Lyme disease
that harms the patients even more.
They're already sick, but then if they're not believed
that's insult to injury.
There's potential multiple mechanisms
that's driving those symptoms.
In other words, this is a very heterogeneous
group of patients.
Some of the patients have more prominent pains.
Some have more prominent fatigue.
Some have more prominent cognitive symptoms.
And we think about what drives them similarly
in different realms.
For instance, one thing driving the symptoms
may be persistent infection
or at least persistent elements of infection,
parts of the bacteria or virus.
The second thing driving the symptoms may be
the host's human inflammatory response
responding to those antigens or bacteria
or independent, i.e. autoimmunity.
And then a third component in this kind of
we call it this Venn diagram of causes
could be alterations in brain physiology.
We've done studies showing that on PET imaging
of the brain that the actual cells in the brain
are activated in the Lyme disease patients.
And they're activated probably because they're inflamed.
When the brain gets inflamed,
even if it's not due to direct infection,
inflammation and the brain are not a good combination.
It alters the way the brain works,
the way it connects, the way it functions.
And so we kind of have these three things
that are probably working,
sometimes all in concert,
the infection, the inflammatory response
and then the impact on the brain.
One of the things we're learning from the COVID long haulers
is they have a very high percentage are suffering
from symptoms that may be traced back to dysfunction
of the autonomic nervous system.
One specific dysfunction has to do with control
of their heart rate and blood pressure
in an illness called POTS,
which stands for postural orthostatic tachycardia syndrome.
They're seeing that much more commonly
in the COVID long haulers.
And what this does is it causes abnormalities
in pulse and blood pressure.
And when that happens, that contributes to symptoms
like fatigue and lightheadedness,
and implies that something going on
in the COVID long haulers has caused dysregulation
or illness in their autonomic nervous system.
Thinking back about it, we started think about that
in our Lyme disease patients and similarly,
to lesser extent but similarly,
we've seen that in those patients as well.
Chronic fatigue, the same story,
a lot of autonomic symptoms.
So this may be, again, another theme
that's going to emerge is that one of the mechanisms
of symptoms may have to do
with this autonomic nervous system dysfunction.
Discoveries in COVID may be able to be translated
to the Lyme disease arena,
also to the chronic fatigue arena,
and they may come much more quickly now
that there's so much attention and money being put
into the COVID research.
So the Lyme disease research center is very excited now
to be involved in COVID research as well.
We have this great opportunity to look at the mechanisms
of our Lyme disease long hauler patients
and compare them to the COVID long haulers.
So it's a really unique opportunity to take the work
we've been doing and now place it side by side
with investigators at Hopkins.
Taking some of the lessons we've already learned
in Lyme disease and using those
and put them together to try to find the answers.
(gentle music)