Lyme Disease: The Silent Pandemic
Lyme disease is the other pandemic that has been ignored. Tick season and an increase in Lyme disease cases in the next few months will be difficult to discern from COVID-19. Plus, many hospitals have reported running out of doxycycline during COVID-19, which is the number one medication that is used for lyme disease… All of this will skyrocket cases of lyme and make it even harder to treat and diagnose.
· Lyme Disease is a silent pandemic
· Estimates suggest that over 1 million people suffer from chronic Lyme disease
While the county races to find a cure for COVID-19 in record time, lyme disease treatment and testing lag behind in comparison.
We are living through what many would consider our first real pandemic in our lifetime. However, I would argue that we have been in the midst of a global epidemic of Lyme disease for over twenty years.
Lyme disease has been underreported and misunderstood since the first case was diagnosed in 1975 in Old Lyme, CT. While we watch the rapid scientific discoveries come to light regarding COVID-19, I become more aware of the paucity of new data for Lyme disease.
In a matter of months, we have seen a rapid response to the development of tests for COVID-19 PCR and antibodies (with room for improvement), but in the 39 years since the bacteria that causes Lyme disease (Borrelia burgdorferi) was identified, we are still incredibly behind in diagnostic testing, as well as treatment strategies and prevention.
While we are engaged in the battle with one infectious disease, we have the opportunity to reflect on other infectious diseases, specifically Lyme disease and co-infections, such as Babesia, Bartonella and other tick-borne infections. Tick-borne infections are on the rise and increasing exponentially with some research indicating that there are approximately 300,000 new cases of Lyme disease each year.
This increase in cases is due to a number of factors. The tick population, as a whole, has exploded as a result of global temperature increases, which in the last few years has led to shorter winters that allow adult ticks to continue to thrive. In addition, ticks have expanded their range as their hosts, the white-footed mouse and deer infiltrate into more heavily populated areas.
Every year, as the number of ticks increase, so do the number of diseases that each tick can carry. Research from July to October 2019 in upstate New York showed that 32% of the ticks carried at least one infection, primarily Lyme disease. This number was higher than expected. 3% of the ticks also carried multiple diseases or co-infections.
Each tick-borne infection carries their own risks. Some are deadly, like Powassan, some present acutely but are easily treated if found early, such as Ehrlichiosis, and others vary dramatically in their presentation and ease of treatment. The reality is that with Lyme disease, many patients that are infected are diagnosed and treated early, can make a full recovery.
However, about 10 to 20% of patients may have persistent symptoms that become chronic. There is very little data about chronic lyme disease and many believe that these patients have PTLDS (post-treatment Lyme disease syndrome), which implies that the patient’s symptoms are due to something other than continued infection. Similarly, COVID-19 seems to cause persistent or relapsing symptoms in some patients long after the initial infection.
Understanding our immune system’s response to one infection might, in fact, benefit our understanding of others.
People are justifiably fearful about getting infected with COVID-19. It’s a new virus. We don’t know that much about it, but it seems that every day we slowly gain insight into how this virus works. What is most astonishing is the tremendous variability in presentations that patients with COVID-19 have. No two patients are alike.
We are seeing some patients with mild respiratory symptoms and others with severe symptoms requiring intubation. We are seeing patients present with large blood clots, like pulmonary embolisms or strokes. We are seeing patients with other vascular symptoms, such as “COVID toes.” Some patients have gastrointestinal symptoms. Fever was initially thought to be a hallmark feature of the viral infection, but the data shows that less than 50% of patients with COVID-19 develop a fever at presentation.
The medical field is starting to understand the importance of keeping an open mind and that “no two patients are alike.” This approach sounds incredibly familiar to those of us who treat patients with Lyme disease, but unfortunately, it has not necessarily been embraced by the medical establishment until now.
Lyme disease is similarly inconsistent.
Lyme can present early with classic symptoms of a bull’s eye rash, fever, headache and muscle aches but less than 50% of patients present in this manner and even when there is a rash it often doesn’t resemble a bull’s eye. Many patients don’t even remember getting bitten by a tick, so Lyme disease can go undetected during the early stages until it infects major organs. It can damage the heart, the nervous system, joints, and many other parts of the body.
Lyme is a multisystemic disease with great variability that is not often recognized by doctors which, unfortunately, leaves many patients without an accurate diagnosis and without proper treatment. COVID-19 also causes multisystemic inflammation, but this phenomenon has been well accepted by medical professionals.
You don’t see COVID-19 patients being stigmatized as Lyme patients often are. Lyme disease can cause debilitating symptoms such as fatigue, headaches, joint pain, and brain fog, and yet on the outside these patients can look completely normal. This leads those around them, including their doctors to doubt the severity of their illness. They may be labeled as “crazy.” We often refer to diseases like Lyme as invisible illnesses, because they are invisible on the outside but devastating to the patient on the inside.
This is the spring when the trees are blooming, the grass is growing, and the ticks are out in droves, raising the concern for the potential of a significant rise in Lyme disease cases. This year might, in fact, be worse than previous years due to the relatively warm winter, which allowed ticks to continue thriving. I believe SARS-COV-2 might play an even larger role in the potential increased incidence of Lyme disease. While we remain isolated at home and practice social distancing, the beautiful weather will send more people outdoors. Some will stay in their backyard and others will venture out onto hiking trails. Some have new puppies or dogs that need to be exercised outdoors and others will embrace growing their own food and gardening.
What precautions are people taking before going outside? I know many will don masks in case they run into other people. I think some people will remember to put on sunscreen or wear a hat to prevent a sunburn.
How many people will remember to protect themselves from insect and tick bites with insect repellant?
How many will remember to do tick checks when they come indoors?
I fear that our shift towards COVID-19 prevention may shift the focus away from Lyme disease prevention. This could lead to an escalation in tick bites and new infections.
There is real danger from getting bitten by a tick. There is, no doubt, real danger from getting infected with SARS-COV-2, too. Both pose serious risks and both present challenges to treatment. For months preceding the pandemic, we had been seeing an increasing number of drug shortages. Certainly, since the pandemic, this situation is worse. As soon as a drug is found to have activity against COVID-19, people begin to stock-pile and the supply dwindles quickly.
Unfortunately, some of these drugs that are in limited supply are used as first and second-line treatment against Lyme and co-infections, such as doxycycline and hydroxychloroquine. Lyme disease that is not adequately treated can leave long lasting, chronic sequelae that may be irreversible. This is not acceptable. Why? Because it is not acceptable to watch people suffer and potentially die from infections that are treatable just because the medications are not available due to manufacturing issues and stockpiling.
Lastly, as we start to see a rise in Lyme disease, not only will we have great difficulty with treatment, but I suspect diagnosis may be delayed due to the overlap in symptoms with COVID-19 in the early stages. I urge everyone to be on alert. Check yourself, your children and your pets for ticks. Use appropriate insect repellants but also use caution avoiding heavily wooded areas, areas with high grass and shrubs, leaf piles and wood piles, and other high-risk areas. Alert your doctor if you get a tick bite or develop fever, achiness, headache or other non-specific symptoms. Of course, it could be COVID-19, but it could also be something else.
We cannot ignore other potentially dangerous conditions and we must not assume that everything is COVID-19. I strongly urge doctors to keep Lyme disease and other tick-borne infections on their differential diagnosis list. While our country, our scientists and our medical professionals work towards control of the COVID-19 pandemic, let us not forget the silent pandemic of Lyme disease.
Lyme disease is found in every state in the U.S. and every continent in the world, except for Antarctica. The incidence and prevalence of the infection increases each year. Based on the assumption that at least 20% of patients experience treatment failure, we currently have over 1 million people in the U.S. with chronic Lyme disease and this does not include many who are undiagnosed, yet suffer the debilitating consequences.
Despite these growing numbers, naysayers still believe that Lyme is very easily treated and not a significant public health problem. That couldn’t be further from the truth. There are very loud voices championing Lyme disease research and education and yet their voices are muffled by those that don’t recognize that we are dealing with a global health issue that is expanding its reach every year.
Once we gain control over the immediate COVID-19 pandemic, I truly hope we use what we have learned and apply the same sense of medical urgency to Lyme disease and other tick-borne infections.
The destruction of Covid-19 is visible. The destruction and multisystemic effects of lyme disease is not. Just because you cannot see the destruction, does not mean it is not there. It is time we treat invisible illness with as much urgency as we treat visible illness in this country.
The economic impact of the effects of chronic lyme disease.
Lyme disease costs approximately $1.3 billion each year in direct medical costs in the United States, but this is likely a gross underestimate that doesn’t consider the full economic and societal costs. Some have proposed the cost to be closer to the $50- to $100-billion-dollar range. The numbers are even more staggering when we look at individual patients and what the cost is to them, not just financially but also in quality of life.
On average, Lyme patients might see 10-30 or more doctors before being properly diagnosed. Some of the costs might initially be covered by their insurance but as time goes on and their condition worsens, patients often need to do more extensive testing and see doctors outside their insurance plan, who have a specific interest and passion in treating complex, chronically ill patients. Lyme disease is a complex, multisystemic illness that is difficult to detect due to the lack of sensitive test and the way it evades the immune system, wreaking havoc before it’s discovered. The current medical model does not allow doctors to spend enough time with patients, which leads to misdiagnoses and even false labeling, that is not easily reversed.
Because the symptoms are so diverse and involve so many different parts of the body, including the nervous system and the brain, doctors have a hard time piecing the symptoms together.
Unfortunately, these patients are at risk for being labeled with a functional psychiatric disorder like anxiety, depression or OCD, and are often sent for psychiatric evaluation, which further delays them from receiving proper treatment for Lyme disease. We know that Lyme can cause neuropsychiatric illnesses, but this needs to be recognized as a consequence of the Lyme and treated as such.