Tag Archives: Lyme disease and COVID-19

Corona With a Twist of Lyme: Part 4

by Jennifer Crystal

As many of you know from my previous blog posts and my webinar with Daniel Cameron, M.D., I got sick with COVID-19 in mid-March. I have charted my progress with in Corona With a Twist of Lyme Part 1, Corona With a Twist of Lyme Part 2, and Corona With a Twist of Lyme Part 3. This final installment will give an update on how I’m doing and offer some overall thoughts from my experience.

The biggest news to report is that is I got a positive COVID-19 antibody test in early June. This was exciting not just because it meant I had recovered from and build antibodies against the virus (though we don’t know how long those antibodies will last), but because it validated the clinical diagnosis my doctor had made months earlier. My original COVID-19 test, done six days after onset of symptoms came back negative. Given the 30% false negative rate of these tests; the timeline of my test; certain medications I was on that may have affected my results; and the fact that I had classic COVID-19 symptoms including vomiting, low-grade fever, dry hacking cough, shortness of breath, and complete loss of taste and smell, my doctor was sure the test result was inaccurate. She told me to assume I had COVID-19, to treat symptoms accordingly, and to quarantine.

So it didn’t come as a great surprise when my antibody test came back positive, but the news did offer relief. I knew what I had. My doctor knew what I had. The positive antibody test validated that knowledge and confirmed I’d recovered, but it wasn’t a necessary diagnostic tool.

Sound familiar? Lyme warriors are well-versed in living with an illness that doesn’t yet have a fool-proof diagnostic test. We are used to having to rely on the clinical expertise of Lyme Literate Medical Doctors (LLMDs). When we get positive test results from specialized labs, we feel validated, but we also know that those results aren’t the end-all to tick-borne illness. As I mentioned in an interview I gave to Undark for the article “In the Uncertainties of Lyme Testing, Lessons for COVID-19”, “What I learned from Lyme disease was you have to treat the patient, not the test.”

Jennifer Crystal Kyaking

And as with Lyme, recovering from COVID-19 doesn’t mean I’m immune to it, so I still need to take necessary precautions. That said, these days I am literally and figuratively breathing a little easier. While I do still get some tightness and soreness in my lungs, especially after exertion, it’s much better than it was at the time of my Corona With a Twist of Lyme Part 3 report. In that post I set an intention of kayaking and paddleboarding by the end of summer. As evidenced by the photo below, I have met part of that goal! In fact, as of this writing, I have been kayaking three times, and each time my arms and lungs have felt stronger. Though I still use an inhaler, I’ve lowered the dosage, and I hardly cough at all these days. I plan to try swimming next week, and if that goes well, I hope to paddleboard next.

Aside from the residual lung inflammation, I have no remaining symptoms of COVID-19. I have been fever-free since mid-May. My energy is just about back to baseline. My senses of smell and taste are back fully (though my sense of smell is not quite as strong as it once was, and a couple food items taste different now—small prices to pay to generally be able to smell and taste everything). I don’t feel constantly dehydrated like I did during acute COVID-19. I have no residual head or sinus pressure.

Most importantly, I don’t feel sick; I just feel like myself.  After a Zoom class, one of my creative writing students recently asked me, “Are you feeling better? Because in the last few weeks, it just seems like you’re back.”

I am, and I intend to stay.

Additional COVID-19 and Lyme Disease Resources:

GLA POV: Parallel Pandemics: COVID-19 and Lyme Disease
Blog: Q&A on COVID-19 and Lyme Disease with LLMD
Blog: Personal Patient Experience with COVID-19 and Lyme Disease
Video: Webinar with Dr. Cameron and Lyme-COVID-19 patient
Letter: GLA CEO Addresses COVID-19 and GLA Community
Letter: GLA Chairman on What We Can Learn from COVID-19 Response

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

Lyme and COVID-19 Panel: Follow-up Q and A

by Jennifer Crystal

Last week, I had the opportunity to talk about my experience as a Lyme patient with COVID-19 on a panel with leading Lyme specialist Dr. Daniel Cameron. Thank you to everyone who remotely attended the event! You asked so many good questions that we didn’t have time to answer them all. In this blog post, I’ll answer some of the questions that we weren’t able to get to.

You mentioned having a low-grade fever. What does low-grade mean? Is your body temperature normally low?

COVID-19 tends to present with a low-grade fever, 99.0-100.5 F, in mild cases. Cases become more serious the higher fevers spike. My doctor wanted to hear from me if my fever went above 100.5 F, but it did that only once, in the very beginning of my COVID-19 infection. In the five weeks since, it has hovered between 99.0-100.0 F, generally going up in the late afternoon or evening. Sometimes the fever goes away entirely for a few days but then comes back. 

It’s a good idea to check your temperature twice a day before you’re sick with COVID-19, to get a sense of what your usual temperature range is. This is especially true for Lyme patients who may already be running regular low-grade fevers. For two years during the acute phase of my illness with Lyme and two of its co-infections babesia and ehrlichia, and Epstein-Barr virus, I had a 99.2 F fever every day. Now in remission, my usual body temperature is between 97.9-98.4 F, so I can really tell when it starts to creep up towards 99.0. 

Is babesia different in its effects on susceptibility to COVID-19 than Lyme and other co-infections?

It may, but since COVID-19 is a novel virus, the research doesn’t yet exist for us to know empirically. Babesia is a parasite that drains oxygen from red blood cells. Because of COVID-19’s effect on the respiratory system and oxygen levels in the body, it’s natural to think that having babesia could affect one’s ability to fight COVID-19. When I was in an ambulance and being taken for a COVID-19 test, the EMTs got nervous when they heard I have babesia, and I suspect that’s what swayed their decision to wheel me inside the hospital to a quarantined room, rather than drop me outside at a COVID-19 testing tent. That said, my blood oxygen level (commonly referred to as “pulse ox”) was normal that day and has been normal throughout my convalescence (I check it daily at home). My peak flow (airflow output from my lungs) was low at first but it has been getting better over these weeks and is now normal, probably aided by the inhaler I’ve been taking since the onset of the COVID-19 infection. 

It’s likely that my underlying tick-borne infections, and Epstein-Barr virus, have slowed my recovery from COVID-19, but we can’t yet say if babesia is a particular culprit in that delay. The good news is that COVID-19 does not seem to have caused a flare-up of my babesia symptoms. I have not had increased air hunger in my limbs; the air hunger of COVID-19 has literally been about not being able to get a deep breath from having compromised lungs. I have not had migraine headaches. I have had some night sweats, but that may be part of the COVID-19 shedding. 

Can having COVID-19 at the same time as tick-borne illnesses slow recovery?

My primary care physician says I’m her longest-running COVID-19 patient, including those in the hospital, and suspects it’s because of my underlying infections. As of this writing, I have been sick with COVID-19 symptoms for 42 days. I am, however, making progress. I’m still coughing, mostly when I talk, but my shortness of breath is better. My sense of taste is almost fully back, and my sense of smell is slowly coming back. I can now smell strong scents like cleaning fluid and certain spices. My energy level is getting better. I haven’t had fever in a week, and I am hoping this is really the end of it. For me, recovery from COVID-19 has been a lot like recovery from Lyme; there have been ups and downs, but over the long-term, I can see forward progress. 

With people being more aware of their health and documenting their symptoms, how do you think patient advocacy will change post-COVID-19?

Lyme patients are generally hyper-aware of their symptoms, which can change hourly, but people who don’t have underlying health issues are now becoming much more cognizant of their own health. That’s a good thing. People are paying attention to their body temperature, to every slight sniffle (which is not generally a COVID-19 symptom) or cough. People are documenting their symptoms so that they can chart them over time and report them to their doctors, something I have long encouraged Lyme patients to do. 

Because of this heightened awareness, my hope is that people will become more mindful of their body’s changes and needs, and more capable of voicing concerns to their doctors. They might also be able to read their own bodies better, rather than rushing off to a doctor the minute they feel a little off. Lyme patients will perhaps become more attuned to which symptoms are Lyme-related and which aren’t. This is really important since we always need to consider other health issues beyond our one or more tick-borne illnesses.

Finally, my hope is that the global pandemic might help people better understand the seriousness of Lyme disease, which has more reported cases each year than HIV and breast cancer combined. I hope it will increase understanding of the physical, emotional, social, and financial hardships that occur from a long-term illness and the isolation convalescence brings. 

Additional COVID-19 and Lyme Disease Resources:
Webinar: Lyme and COVID-19 Panel
GLA POV: Parallel Pandemics: COVID-19 and Lyme Disease
Blog: Q&A on COVID-19 and Lyme Disease with LLMD
Blog: Personal Patient Experience with COVID-19 and Lyme Disease
Letter: GLA CEO Addresses COVID-19 and GLA Community

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

parallel pandemics_covid-19_lyme disease

Parallel Pandemics: COVID-19 and Lyme Disease

Are there connections between COVID-19 and Lyme disease?

by Timothy J. Sellati, Chief Scientific Officer, GLA

There is only one region on the globe with no cases of COVID-19. Except for Antarctica, every continent has confirmed cases of disease. Total cases in the rest of the world are quickly nearing one million, according to data from Johns Hopkins University, with nearly 50,000 deaths reported due to the virus. COVID-19, caused by the novel SARS-CoV-2 virus, is a pandemic of the highest magnitude, and was officially declared as such by the World Health Organization (WHO) on March 11, 2020.1

What defines a pandemic?

According to the Centers for Disease Control and Prevention (CDC), infectious diseases are defined by the number of cases usually present in a community. The starting point or baseline is the endemic level of the disease. On the other end of the spectrum, highly transmissible and/or deadly infections that spread across the globe and can impact tens or hundreds of millions are considered pandemic diseases. Throughout history, a rogue’s gallery of pathogens have caused pandemics that include influenza, cholera, HIV/AIDS, and smallpox, to name a few.

Believe it or not, two infectious diseases from which interesting parallels can be drawn are COVID-19 and Lyme disease. Both began as sporadic, clusters of disease, referring to an aggregation of cases grouped in place and time that are suspected to be greater than the number expected. COVID-19 emerged in Wuhan, within Central China’s Hubei province, and Lyme disease in Lyme, Connecticut in the northeastern U.S. Both rapidly evolved to become hyperendemic, characterized by persistent, high levels of disease occurrence. When the amount of disease in a community rises above an expected level, it becomes epidemic in nature, with sudden increases in the number of cases over a larger geographic area than anticipated. Sometimes, an epidemic stays contained to a specific area—but when it extends into other countries and spreads across continents, it becomes a full-blown pandemic. That was the case in 2003 with the outbreak of severe acute respiratory syndrome (SARS), the 2009 outbreak of swine flu caused by the H1N1 flu virus, and now SARS-CoV-2 in 2020, which is a close ‘cousin’ of SARS.

Is Lyme disease a pandemic like COVID-19?

While Lyme disease clearly meets the definition of an epidemic one could persuasively argue it too has achieved the level of a pandemic. Although Lyme disease lacks the mortality rates associated with COVID-19 it certainly meets the definition of a pandemic with regard to its global distribution, along with other tick-borne diseases (TBDs), and its annual case incidence rate of hundreds of thousands of people globally is estimated to be as high as 500,000. According to WHO, in addition to the U.S. there are concentrated areas of Lyme disease cases in northwestern, central and eastern Europe, and forested areas of Asia.2 It’s estimated that as many as 427,000 cases may occur annually in the U.S.

How are pandemics treated differently?

When epidemics evolve into pandemics, the biggest difference is that more governments are involved in and more financial resources – public and private – dedicated to preventing the progression of the disease and, potentially, treating the people who have it. Unfortunately, this is where similarities between COVID-19 and Lyme disease diverge. Unlike for COVID-19, there is no concerted and comprehensive effort to stem the global increase in TBDs or to treat patients suffering from them.

Despite this difference, another unfortunate commonality between COVID-19 and Lyme disease is the fear, anxiety, and confusion experienced by individuals who are unsure whether they are infected or not. Do the sometimes subjective, non-specific symptoms they are experiencing mean they are infected, or are they suffering from something else? This is true of both SARS-CoV-2 or Borrelia burgdorferi, the causative agent of Lyme disease. Where can they get tested, how accurate are the tests, what treatment options are available and will they work for everyone, etc.? Can tests distinguish uninfected from asymptomatic infected individuals and how about people who are actively infected vs. those with prior exposure who have recovered?

The medical community is rallying to develop a set of rapid and reliable direct diagnostic tests for SARS-CoV-2 or indirect tests to detect antibodies raised against the virus. Although many clinics still lack access to a robust, accurate and sensitive SARS-CoV-2 test, impressive progress has been made in a matter of weeks. In contrast, it took almost six months to identify and establish assays for the coronavirus responsible for the 2002–2003 SARS outbreak.3 Following the 1995  recommendation of the CDC, the majority of laboratory tests performed for diagnosis of Lyme disease are based on a two-tiered test algorithm that detects antibodies against B. burgdorferi in serum of suspected Lyme patients.4 These original recommendations for serodiagnosis of Lyme disease relied on an initial enzyme immunoassay (EIA, 1st tier) followed by separate IgM and IgG Western blots (2nd tier), if the EIA test result is positive or borderline. While the two-tiered test algorithm works well for later stages of the infection, it has low sensitivity during early infection. With accuracy ranging between ~43% to 65% for early Lyme disease diagnoses, as many as 57% of these patients may receive a false negative result.5 Such poor diagnostic performance would be devastating to current efforts to stem the spread of SARS-CoV-2 across the globe!

Recently revised CDC recommendations now allow for replacing the Western immunoblot assay with a second EIA6 and efforts are underway to develop tests with improved accuracy in early detection of Lyme disease. This is important as it is recognized that early detection increases the likelihood of effective treatment with antibiotics such as Doxycycline. Another significant draw back to existing indirect, Lyme diagnostic testing, which looks for the presence of antibodies against B. burgdorferi, is that it cannot distinguish active vs. prior infection. In the latter case, people have been successfully treated and no longer experience symptoms associated with the original infection. Not knowing whether someone is actively infected or not makes the medical decision to continue or alter treatment particularly difficult.

Many of these same diagnostic shortcomings in the Lyme disease field also hamper efforts to fully understand who is infected with SARS-CoV-2 and likely to be shedding virus, who is not, and who has recovered. This uncertainty results in a great deal of fear, anxiety, and confusion on the part of those seeking diagnosis and treatment. Although Lyme disease patients do not suffer the same mortality rates as those with COVID-19, the long-term consequences of prior infection associated Lyme disease can encompass arthritis, carditis, and neurological complications, particularly cognitive deficit and neuropsychiatric disorders. Collectively, such debilitating and chronic symptomatology leads to diminished quality of life and the increased likelihood of depression and suicidality. And in rare cases, Lyme disease can result in death.7

In summary, while Lyme does not share the same rate of infection and death as other pandemics it can have a negative impact on patients by imposing long-term health and immune-compromising challenges that can linger for years. It is important to appreciate that diminished immunity, as a result of Lyme disease and other TBDs, can make patients more susceptible to a pandemic like COVID-19. Ideally, investment of sufficient resources to mount a concerted and comprehensive effort to stem the global increase in Lyme disease and other TBDs would be made, as it is being made to combat COVID-19.


Additional COVID-19 and Lyme Disease Content:

Blog: Q&A on COVID-19 and Lyme Disease with LLMD
Blog: Personal Patient Experience with COVID-19 and Lyme Disease
Letter: GLA CEO Addresses COVID-19 and GLA Community

Corona With a Twist of Lyme

by Jennifer Crystal

Our nation is in a crisis about novel coronavirus COVID-19, and no one is more fearful than those with pre-existing conditions. These patients, along with the elderly, are at high risk if they contract the virus. Lyme patients are rightfully concerned that their underlying tick-borne infections makes them especially susceptible to COVID-19, and that getting COVID-19 will make their original underlying infection worse, landing them in the hospital on a ventilator. 

I understand these worries, because I have them, too. While recognizing and not downplaying the risks, I want to give some measure of reassurance based solely on my own experience as a patient with Lyme, babesia, and ehrlichia, who is also recovering from a suspected case of COVID-19.

I first became symptomatic two weeks ago. As of this writing, my symptoms have diminished dramatically. I haven’t had a fever in five days, and my cough and shortness of breath are becoming less evident by the day. Despite my tick-borne infections, my immune system is fighting this respiratory virus very well. Moreover, the presumed virus does not seem to have worsened my response to tick-borne infections. 

I’ve been lucky, and I know that won’t be the case for everyone. But there are steps Lyme patients can take now, either to prevent themselves from getting sick or to treat the virus if it’s a mild case:

  • Call your doctor. If you are not symptomatic, ask your Lyme Literate Medical Doctor (LLMD) what you should do to boost your immune system. My doctor had me increase the dose of some of my supplements. Do not just increase supplements or add new ones on your own, or based on advice you get off the internet. If you become symptomatic, call both your LLMD and your Primary Care Doctor before you do anything or go anywhere, unless you are in critical condition.
  • Do not immediately go to a hospital, doctor’s office, or testing center unless you are in critical condition. If you are mildly symptomatic, call your doctor and ask if it makes sense for you to be tested, if you need acute medical care, or if you can self-treat at home. The latter is the safest option. If you don’t already have COVID-19, you can contract it at a doctor’s office, hospital or testing center. If you do have it, you could infect others while you’re out and about. The exception is if you have a high fever or are in severe respiratory distress. Had I known a week ago what would happen when I did go for a test, I would have just stayed home, assumed I had COVID-19 and self-quarantined. 
  • Do not pre-order hydroxychloroquine or take it prophylactically unless prescribed by your doctor. If you are already on hydroxychloroquine for Lyme and you contract COVID-19, the drug may help kill the virus. But there is not yet evidence taking it as a preventive measure might not help protect you from COVID-19, and it might worsen your Lyme symptoms. More importantly, it will diminish the supply for patients who have a genuine need for the medication, including certain Lyme patients and those with lupus and rheumatoid arthritis. 
  • Electrolyte-enhanced water: COVID-19 is dehydrating. Stock up now, before you get sick, on as much electrolyte water as your family would reasonably need for a two-week period. Don’t buy more than that amount; leave some for other people, too. Do not hoard. 
  • Fever reducers: Again, have these on hand before you get sick, but also do not hoard supplies. 
  • Inhaler: Like hydroxychloroquine, this is not something you can or should use prophylactically, but if you already use an inhaler, this would be a great time to make sure it’s not expired or to get it refilled. If you experience mild COVID-19 symptoms, your doctor may prescribe a non-steroid bronchodilator. This has helped me immensely. Again, if you can, it’s better to use this treatment at home than to require a ventilator at a hospital. 
  • Stay home! This time of social distancing is about you, the immunocompromised. Protect yourself! Don’t socialize with anyone outside of your immediate family. Even if that person seems healthy, they could be a carrier who could unknowingly pass COVID-19 on to you. Order groceries online and wipe them down with antiseptic wipes before bringing them into the house. 
  • Wash and sanitize: Wash your hands as much as possible, for at least 20 seconds with warm soapy water. Sanitize an object before you touch it. 
  • Do not panic! Lyme spirochetes thrive on stress. So don’t give them reason to start replicating while you’re trying to fend off an acute infection. The calmer you can stay, the healthier your body will remain. 
  • And finally, Be Tick AWARE: Don’t let protecting yourself from one illness leave you vulnerable to another. Tick season has started and the ticks are out in full force, expanding their geographical reach more than ever. Make sure to protect yourself and your pets if you do go outside by using repellant and undertaking tick checks. 

As Lyme patients, you may be compromised immunologically, but you are ahead of the game when it comes to convalescence and social distancing. You know what it’s like to be sick for much longer than the standard length of time for COVID-19. You know what it’s like to be isolated at home. You know how to take care of yourself and advocate for your needs. You already have resilience. 

With these suggestions, appropriately considering, I hope that you will stay healthy, or, that if you do contract COVID-19, that you will fight it off effectively and promptly. 

Be well. 

Related Post:
Corona With a Twist of Lyme: Part 2
Letter from CEO About COVID-19 and GLA Community 

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].