Over the past few months, it’s been a concern of many Lyme disease charities and organisations that the similarities in initial symptoms between Lyme disease and COVID-19 could lead to a rise in undiagnosed cases, or delays in treatment.
As the pandemic progresses and more is being discovered about the long term effects of the coronavirus, further worrying parallels have been drawn between the two conditions and the life-limiting, long term effects.
But what could this mean for the future of chronic illness? Could this open the doors for better understanding from health professionals, and a willingness to consider a persistent infection as the cause for many with diagnoses such as Chronic Fatigue Syndrome and Fibromyalgia?
We’ll take a look at some of the recent studies and articles that have shown these similarities and started discussions.
The initial symptoms
As the coronavirus came upon our shores, we were first told to look out for initial symptoms that included a fever, dry cough and difficulty breathing.
Other symptoms included fatigue, muscle aches and for some, headaches.
Social distancing was put in place, and eventually, the UK went into lockdown, with only one hour of outdoor exercise allowed each day.
With people taking advantage of the ability to spend time outdoors, and in order to socially distance from others, many headed out to more rural areas. And those who would normally exercise inside at swimming pools and gyms were also forced to head outside.
This, combined some crossover symptoms, led Lyme organisations to become concerned about not only the possible increased exposure of public to ticks, but possible confusion around diagnosis.
These fears began to be founded, with cases such as a woman in Guildford being first diagnosed with COVID-19, before realising she was suffering from Lyme after developing an EM rash and recalling her tick bite a few days previously.
But not everyone gets the rash, or sees a tick bite them.
We’ve also heard reports of many Lyme disease patients saying they’ve been tested for COVID-19. Whilst this is undeniably an important step considering the current circumstances of the pandemic, it does also cause concern that if coronavirus is the first port of call, what part it might play in delaying the diagnosis of the true cause – be that Lyme or something else. Or might it contribute to other symptoms being missed?
Another complication is that many are having to be diagnosed over the phone or by video call, which also leaves room for error.
This simple article from John Hopkins University explains the difference between symptoms very well.
The long term effects
As time draws on and evidence of the longer term effects of COVID-19 are starting to become apparent, it’s been found that this is not necessarily simply a respiratory disease like first thought, but a potentially persistent, multi-system disease.
A BMJ paper discussing the management of post-acute COVID-19 in primary care reported on research that found approximately 10% of people who test positive experience prolonged illness beyond 3 weeks, and some for longer than this (1).
Patient stories have surfaced online, with these self-titled COVID long-haulers, who didn’t require hospital intervention, speaking of fatigue and neuro-cognitive issues that have continued for weeks or months.
Again; sound familiar?
Writer Jemma Kennedy wrote of her experience in the Guardian. Two months after catching the coronavirus, she speaks of being “felled again by a bout of post-viral fatigue that is almost as bad as the disease itself.” In the article, she asks:
“Can we avoid the battle faced by chronic fatigue or ME sufferers, our closest cousins, who have historically found it difficult to a) get diagnosed, b) treated and c) recognised as even having a bonafide disease?“
Dr Nisreen Alwan, an Associate Professor of Public Health at Southampton University, wrote an article on her experience with long-term COVID symptoms. In the same way that some Lyme disease patients can receive treatment and make full recovery, whereas some continue to experience symptoms, she says that:
“Defining and measuring recovery from COVID-19 should be more sophisticated than checking for hospital discharge, or testing negative for active infection or positive for antibodies. Once recovery is defined, we can differentiate COVID that quickly goes away from the prolonged form.”
In another parallel many chronic Lyme sufferers will identify with, she says: “As long as ‘long COVID’ is labelled as anecdotal, it will not be taken seriously, and public communication will neglect it”.
Her solution lies in defining simple criteria for what counts as recovery, rather than relying on a negative test, and studying the characteristics of those with prolonged ill health – an approach that that the Lyme community have been advocating for in those who remain ill after treatment.
A survey carried out by Survivor Corps via their Facebook group found that COVID sufferers are reporting symptoms wider than those recognised by public health bodies, which include neurological, eye and skin complaints.
Fatigue was by far the most common symptoms reported by these “long-haulers”, with almost every respondent reporting it. This was followed by muscle pain, shortness of breath and difficulty concentrating or focussing.
Again; this is another parallel towards what some Lyme patients experience. A wider range of symptoms that might be lesser known or understood by their GP or specialist, but certainly matching in the fatigue and muscle pain department.
Image from Lambert, N. J. & Survivor Corps.
COVID-19 “Long Hauler” Symptoms Survey Report. Indiana University School of Medicine; 2020.
Over in the UK, a patient group called Long Covid SOS has been formed. They are lobbying the government for support, recognition and research, fighting against claims that those with so-called “mild” symptoms who were not hospitalised are able to recover in a couple of weeks.
The say that some health professionals seem to be unaware of the existence of the phenomenon of long COVID, and that those who do lack the resources to help. They are struggling to be believed by friends and family who are struggling to understand how the illness can be affecting these young, fit, healthy people months down the line.
What likely remains unclear, at least in terms of Lyme disease, is whether these ongoing symptoms are due to a remaining and persistent infection, or whether it’s damage done from the initial infection – as seems to be suggested with COVID-19.
What must be even more difficult, is to be suffering from COVID-19 as well as late stage Lyme disease, and finding it difficult to differentiate the cause of symptoms between the two. This is a dilemma currently being experienced by a recent patient helpdesk caller to the charity.
On 5th July 2020, the NHS announced they would be launching a groundbreaking online rehab service for those who had “mild COVID-19” and are continuing to suffer from breathing, mental health, or other problems.
Nurses and physiotherapists will be on hand to reply to patients’ needs either online or over the phone as part of the service.
It’s hoped that the online service will help ensure that people get the support they need to recover from the effects of the virus, reducing the need to attend physical appointments (and, one assumes, put further pressure on the creaking health system).
The severity and sheer number of people affected by coronavirus has seen a massive amount of time and money being put into research to find effective testing and treatment – something that Lyme disease is yet to receive.
But to look at the scenario from a glass half full perspective – perhaps the post-infection experience of these long-COVID – or chronic COVID – patients will help give further weight and consideration to those suffering with Lyme, M.E. and other such conditions, from the medical community.
A recent BMJ study found that around a third of doctors are reporting long term effects of chronic fatigue, muscle weakness and concentration difficulties in COVID-19 patients. Surely there are enough parallels here for them to consider that both diseases, chronic Covid and persistent Lyme disease, are caused by the long-term effects of pathogens which are complex and still little understood?
Time will tell.
1.Greenhalgh Trisha, Knight Matthew, A’Court Christine, Buxton Maria, Husain Laiba. Management of post-acute covid-19 in primary care BMJ 2020; 370 :m3026
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