LYME SCI: Bureaucratic (and other) differences between Lyme and COVID
We are 40 years into Lyme disease and only six months into the COVID-19 pandemic. Like many others in the Lyme community, I take note of the similarities and differences in the two diseases.
Four bureaucratic differences really stand out:
(1) In a matter of weeks, the federal government can allot trillions of dollars to one disease.
(2) In a matter of weeks, the CDC can develop and mass produce a new test.
(3) In a matter of weeks, the FDA can authorize hundreds of clinical trials using off-label drugs.
(4) In a matter of weeks, the NIH can fund billions of dollars in clinical trials.
Why is Lyme disease—the number-one vector-borne disease in the U.S.—largely ignored by these government agencies?
Since the pandemic began, I’ve felt that the Lyme community had much to teach those seeking answers for COVID-19. Last week, when I learned of the passing of Dr. Neil Spector, I couldn’t help but think of his lessons of cancer and Lyme disease.
In his 2015 book “Gone in A Heartbeat: A Physician’s Search for True Healing,” Neil describes his near-death experience from Lyme disease that led to total heart failure and resulted in a life-saving heart transplant.
Dr. Spector had been a vibrant, healthy man, in the prime of his career. He went from running marathons and coaching his daughter’s soccer team to being put on life-support due to the damage caused by undiagnosed late-stage Lyme disease.
Similarly, millions of people from around the world have had their lives taken or completely upended due to COVID-19. I wish Neil were still here for me to be able to ask him his thoughts, but these are mine.
How are Lyme and COVID-19 similar?
Lyme disease and COVID-19 are both zoonotic diseases, meaning they originated in animals and then spread to humans. The primary reservoir for the Lyme bacteria is mice, and the primary reservoir for COVID-19 virus is believed to be bats.
Both diseases are spreading uncontrolled across the globe. Ticks are the main vector for Lyme, and humans are the main source of transmission for COVID-19.
Lyme and COVID-19 cause many symptoms, ranging from mild to life-threatening.
The majority of Lyme and COVID-19 cases begin with flu-like symptoms including fever, chills, sweats, muscle aches, fatigue, nausea and joint pain. Some (not all) with Lyme will get a rash and most with COVID-19 will get shortness of breath, sore throat, a cough, loss of sense of taste or smell, and/or a runny nose.
When diagnosed and treated early, both Lyme and COVID-19 have a better chance of full recovery. Left untreated, Lyme and COVID-19 can spread to multiple organs and systems of the body causing relapsing and chronic symptoms, and in some cases, death.
Even with prompt treatment, 10-20% of Lyme patients go on to develop chronic illness. In the MyLymeData registry, with over 12,000 participants, 70% were not diagnosed until late stage (greater than six months). Over half went three years or longer without a Lyme diagnosis. As a result, 72% of patients with chronic Lyme report their health status as poor, suffering a worse quality of life when compared to most other chronic diseases.
We are now learning that some with COVID-19 continue to suffer various complications, including severe fatigue, neurological or cognitive problems, and a rare inflammatory condition linked to the endothelial cells in blood vessels.
Currently, both Lyme and COVID-19 are fraught with insensitive testing. To avoid counting false-positive cases, CDC-approved tests are designed to be highly specific. Unfortunately, this means they are less sensitive, which results in many false negatives. So, right now, the majority of tests for Lyme and COVID-19 miss up to 50% of the cases—essentially, no better than a coin toss.
Because of low-quality testing and the fact that not everyone with the disease seeks medical care, many Lyme and COVID-19 cases go unreported. The CDC currently estimates the actual number of Lyme cases is around 10 times higher than reported.
It is too early to estimate the actual number of COVID-19 cases, but some experts suspect it could be 3-10 times higher than reported. Likewise, the number of deaths due to these infections is likely also underreported.
One bit of good news is that both Lyme and COVID-19 can be prevented by taking precautionary measures—protective clothing, tick repellant and tick checks in the case of Lyme, and face masks, distancing and frequent hand washing with COVID-19.
How are Lyme and COVID-19 different?
The most obvious difference is that Lyme disease is caused by a spirochete, Borrelia burgdorferi (Bb), that has been around for thousands of years. In contrast, COVID-19 is caused by a new strain of a betacoronavirus called SARS-CoV-2.
Bb enters through the skin by the bite of a tick. Then it travels to the blood stream and spreads throughout the body, causing Lyme disease.
SARS-CoV-2 enters through the nose or throat via large droplets or aerosols generated when a infected person coughs, sneezes or breathes heavily. SARS-CoV-2 can also be transmitted by kissing or touching your mouth or eyes with contaminated fingers or objects. Once the virus is in the lungs, it travels to the blood stream where it can spread.
Another contrast is that Lyme disease appears to affect women more, while COVID-19 appears to cause more severe disease in men. Some think hormones play a role, with estrogen increasing the severity in Lyme and testosterone resulting in a poorer outcome with COVID-19.
Congress has now appropriated over $2 trillion dollars towards COVID-19, while Lyme disease remains woefully underfunded.
Furthermore, within a few short months, the FDA has cleared hundreds of clinical trials using off-label drugs for COVID-19. In contrast, the last NIH-funded clinical trial to assess Lyme treatment was over 20 years ago.
Other complicating factors
As with any acute illness, underlying factors can make the condition worse. For example, people with pre-existing heart, lung or kidney disease are at greatest risk for developing severe cases of COVID-19. For both COVID-19 and Lyme, a co-infection with another disease—tick-borne or not—complicates things further.
With both Lyme disease and COVID-19, a huge question remains: Why do some people get better and others don’t? Is it genetics, blood type or the immune system’s response to infection? We simply don’t know.
We do know that when the immune system overreacts to infection by producing too many inflammatory cytokines, patients tend to have worse outcomes. This “cytokine storm” happens in both Lyme and COVID-19, but the exact reasons for it are not clear.
Do Lyme medications work for COVID-19?
Some medications used to treat Lyme and other tick-borne diseases are also being used to treat COVID-19.
In fact, tetracycline-derived antibiotics—doxycycline & minocycline, both front-line treatments for Lyme disease—not only have antibacterial properties, but also anti-parasitic, antiviral and anti-inflammatory activity as well.
Other medications commonly used for tick-borne disease that are also being investigated with COVID-19 include hydroxychloroquine, atovaquone (Mepron), ivermectin, azithromycin, disulfiram, other treatments that improve immune functioning or reduce cytokines, and those that stabilize mast cells.
Both are muddied by politics and bureaucracy
What might the COVID-19 community learn from Lyme?
- The science isn’t always settled and sometimes the data lies.
- Healthcare policies are not perfect, often failing those with rare or emerging diseases.
- CDC disease statistics can be shortsighted and misleading.
- Infectious disease guidelines may not work for all patients with that disease.
- Co-infections greatly complicate the course and outcome of disease.
- Sometimes drugs work better in combination.
- Money and politics can corrupt pharmaceutical development.
- Published articles in prestigious journals can be fraudulent.
- Engage experienced clinicians when making healthcare decisions.
- Provide individualized care and include your patients when making medical decisions.
- Controlling inflammation may be the key to controlling COVID-19.
Using the lessons from cancer
During Neil Spector’s presentation at the Lyme Innovation in 2015, he pointed out how most researchers work in silos, thinking one disease causes one illness. “We still talk about Lyme like it’s one disease. It’s like saying you have ‘cancer’ –which means nothing.”
And just like cancer and Lyme treatment, COVID-19 isn’t a one-size-fits-all approach. Spector said, “The key is to figure out what is going on with [the patients] who don’t get better. Those who do not respond to standard treatment.”
As Spector explained, with many types of cancer treatment, the goal is to find the Achilles’ heel. His cancer research looked to genomic sequencing to identify the genetic off-switch, then developed targeted therapies to turn off that switch. His Lyme research, which will continue after his passing, is heading in the same direction. Maybe this will provide a key for COVID-19 as well.
After being misunderstood and misdiagnosed for over a decade, Spector became a strong advocate for patients with chronic Lyme. During his Focus on Lyme 2017 talk , he told the audience, “If anyone tells you ‘this never happens’ you need to get a new doctor. Because anyone who thinks they understand human biology to that degree should get out of medicine.”
I will leave you with one of his tenets that guided me through the worst of my daughter’s illness,
“Trust your gut instincts. Be your own best advocate. No one knows yourself better than you!”
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @ Email her at: firstname.lastname@example.org .
Bransfield, Robert. (2020, May) A Tale of Two Pandemics: Lyme & COVID-19. Video presented to the Academy of Nutritional Medicine, London, England. Accessed via Lyme Disease Association, Inc.
Brinenhoff, Jory. (2020, May) Lyme disease symptoms could be mistaken for COVID-19, with serious consequences. The Conversation.
Committee for a Responsible Federal Budget (2020, April) COVID Money Tracker: Policies Enacted To Date. Accessed June 2020.
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Mervine, Phyllis. (2020, April) NIH’s COVID-19 guidelines offer useful advice for Lyme disease, too. Verbal remarks presented as public comment to the federal Tick-Borne Disease Working Group by Dorothy Leland on April 27, 2020.
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Spector, Neil. (2016, May) Lyme Innovation: How to Hack Lyme 101 Laura Duerkson, Dean Center for Tick Borne Illness
Spector, Neil (2017, May) Lyme Disease: Perspective from a Physician-Scientist-Lyme Disease Survivor. Focus On Lyme Conference
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