Tag Archives: Coronavirus and Lyme disease

COVID 19: Am I Immune?

Does a positive antibody test mean a person is immune and safe from spreading the virus?

by Robert Kobre, Chairman, Global Lyme Alliance

The Global Lyme Alliance (“GLA”) has acquired an expertise in antibodies and immunity as a result of our significant efforts over many years to find an accurate diagnostic test for Lyme disease and a cure. We have studied antibodies to (i) determine immunity, (ii) understand their role in fighting disease and (iii) improve upon today’s unreliable, yet widely used antibody Lyme tests. This has led to GLA’s immense knowledge regarding antibody behavior, immunity and testing. So, America, welcome to our neighborhood!

Frequently, one hears, “I’m happy I tested positive for coronavirus antibodies because now I’m immune.” This is a common assumption that having antibodies against the novel coronavirus (SARS-CoV-2) means protection against COVID-19, and therefore social distancing and similar safeguards can be relaxed. After all, don’t antibodies neutralize the virus and prevent another infection? For many viruses and bacteria this scenario is true. For the virus that causes COVID-19, this may be the case, or the antibodies may act more like they do in Lyme disease. Those who contract Lyme disease do not develop immunity and therefore can repeatedly contract the disease.

There is a myriad of reasons why a person who tests positive for antibodies to SARS-CoV-2 should still practice guidelines to ensure their own safety and that of others. First, antibodies do not stay in your bloodstream indefinitely. Upon infection, some antibodies may only last weeks or a few months. Second, not all antibodies can kill the virus or bacteria. Our immune systems are like a military defense system that is on duty 24/7 against microbial attack. Within weeks of a new intruder being detected, specially designed antibodies are unleashed in the body to hunt down the intruding virus and neutralize it. However, they are not always successful. Third, once the infection is contained, the antibodies are no longer needed and often disappear. If this occurs, don’t despair, because memory cells often develop in the bone marrow that can rapidly produce and re-release antibodies if the virus attacks again. The memory cells are much like anti-virus software that can identify a known virus and intercept it, thereby creating immunity to that invader.

These important memory cells are not always produced, however. For example, a GLA funded study showed that in Lyme disease, the bacteria can shut off the ability to develop memory cells, which then leaves the victim open to repeated infections with no protection. Medical researchers do not know if this is also the case with the novel coronavirus. If it is, then we are certainly not immune to reinfection. In fact, instances of re-exposure and reinfection have recently been reported.

Lyme disease antibody testing has been notoriously inaccurate and unreliable. These tests often fail to pick up Lyme antibodies in the blood and falsely provide a Lyme negative result. GLA has been backing studies to find a better antibody test. For COVID-19, antibody tests were developed quickly and fast tracked by the FDA. While the companies providing the tests have self-reported impressive sensitivity (does the test find the antibody) and specificity (the test finding antibodies specific to SARS-CoV-2 or ones that attach to other invaders too), most have not yet been independently verified. Additionally, tests for antibodies that neutralize the virus have not been made commercially available.

So, the issues are as follows: the antibodies likely don’t stay in your body for long, you may or may not have memory cells to stop a reinfection, the antibodies you do have may or may not be neutralizing, and the antibody tests are useful, but their reliability is not yet confirmed. Lyme disease patients are all too familiar with these unknowns. Until these questions are answered by scientists, please continue to wear masks, social distance and use caution even if you are not symptomatic and your COVID-19 antibody test is positive.

We feel it is important for the public to be aware that there are still critical unknowns as to whether a positive antibody test means a person is immune and safe from spreading the virus. Good science unfortunately takes time and validation. This is extremely frustrating, but it is a reality. Finding these answers is not easy. For 40 years, the biomedical research community has only made incremental progress in answering such questions for Lyme disease. However, Lyme disease research is woefully underfunded by federal and state authorities when compared to the tremendous public health impact of tick-borne diseases in the United States.

GLA is confident that with the billions being spent on COVID-19 research, the answers will come faster and the discoveries made will provide new pathways to cures and tests for this and other devastating diseases that threaten our way of life.

Related posts:

GLA Chairman Letter #1:What Can We Learn from Our Response to COVID-19?
GLA Chairman Letter #2:COVID-19: Is a Vaccine the Answer?  
Blog: Personal Patient Experience with COVID-19 and Lyme Disease
GLA Point Of View: Parallel Pandemics: COVID-19 and Lyme Disease
Letter: GLA CEO Addresses COVID-19 and GLA Community

Corona With a Twist of Lyme: Part 3

by Jennifer Crystal

Since writing “Corona With a Twist of Lyme: Part 1” and following up with a sequel a few weeks later, I’ve received many emails from those who wonder how I’m doing. In this post, I will give an update on my health, and also speak to some of the lessons I’ve learned while battling presumed COVID-19. 

My COVID-19 symptoms started with vomiting on March 11. I then developed a low-grade fever, dry hacking cough, and shortness of breath. After two weeks, I started to feel better—though I never quite shook the cough—and then a second wave hit: the low-grade fever returned and the cough worsened. During week four, I completely lost my ability to taste and smell. 

My Part 2 update was during week five. My sense of taste was starting to come back—I could discern if something tasted bitter or salty, though I could not yet determine flavor—and I could not smell a thing. I then developed sinus congestion for over a week. After that went away, my sense of taste came back fully, and my sense of smell started to return. First, I noticed intense scents like cleaning fluid. I couldn’t distinguish the particular scent of a candle, but I could tell it smelled like wax. Slowly, blissfully, my olfactory system returned to full working order. I can smell everything now, from the pungent odors of brown bananas or tuna to gentler and more pleasant smells like muffins and oatmeal. 

Besides a newfound appreciation for the senses of taste and smell, battling COVID-19 has given me increased gratitude for my body’s ability to heal. Like recovery from tick-borne illnesses, the process has not been linear. My fever went away and came back more times than I can count. I met the seventy-two hours fever-free” guideline for ending quarantine over and over again. Sometimes the fever would come back five days later. Sometimes seven. During one stretch, I went two and a half weeks without fever, only for it to return. As of this writing, I have been fever-free for three weeks, and truly feel that I am past that point of infection.

In fact, my doctor thinks I am past active infection entirely, and will soon run an antibody test and other biomarker tests to support that supposition. Clinically, the only symptom that lingers is the cough, which is improving slowly. I still get short of breath after exertion, and unloading the dishwasher or talking for an hour can leave me winded. However, my chest x-ray was clear, so my doctor feels I am dealing with residual lung inflammation, likely worsened by the inflammation already present in my body as a result of Lyme disease. Thanks to supplements that target this inflammation, as well as a continued anti-inflammatory diet, occasional use of an inhaler, and lots of tea with honey, the cough has become less frequent and shallower. In the time it’s taken me to write this post, I haven’t coughed once.

Moreover, no longer do I feel sick. During the weeks when the fever would relapse, I felt overall malaise. It wasn’t the same as the extreme exhaustion of acute Lyme, but my energy was low. Standing made my legs feel heavy, not to the extent that they do during a babesia flare, but still, it was an ache that made my bones hurt and sent me back to the couch (but not to bed). In the last couple weeks, I have started feeling much more like myself. It will take time to rebuild my stamina, but I can now walk a block without getting winded or tired. As with tick-borne illnesses, I have good days and bad days, sometimes feeling like I take two steps forward and then one step back. Still, I am moving in the right direction. I have every intention of being able to kayak and paddleboard by the end of the summer!

You might ask, after 90+ days of convalescence, why I’m feeling grateful for my body’s ability to heal. The answer is that I am not alone in this long-haul recovery from COVID-19. A recent article in The Atlantic entitled “COVID-19 Can Last for Several Months” tells of thousands of patients like me who got sick in March and who are still battling residual symptoms. Some are worse off than I am. Most are relatively young and were previously healthy and fit with no preexisting conditions. And that is precisely why I am so pleasantly surprised by how well my body has fared with COVID-19. Despite underlying conditions of Lyme, babesia, Ehrlichia, and Epstein-Barr virus, my recovery has been similar to if not better than thousands of healthy people with relatively mild cases of COVID-19. 

The other good news I have to report is that my underlying infections do not seem to be flaring as a result of COVID-19. I admit there were a couple of weeks when I thought they were worsening, especially when I couldn’t shake the fever or fatigue. But like Atticus Finch in To Kill a Mockingbird, my doctor said it was not time to worry yet”—and he was right. 

This experience has reminded me to have faith in my body. It has reminded me to listen to it: to rest when I need to rest, not to push myself until I am ready, to care for myself gently. And as with my tick-borne illnesses, this self-care has paid off. As a Lyme patient, I have fought COVID-19 and landed on my own two feet.

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].

patient story_covid-19_lyme

Corona With a Twist of Lyme: Part 2

by Jennifer Crystal

I have been battling COVID-19 symptoms for almost five weeks. I have had Lyme disease and two tick-borne co-infections—babesia and ehrlichia—for twenty-three years, though my tick-borne diseases went undiagnosed for the first eight of those years. Having COVID-19 on top of tick-borne illnesses has been nerve-wracking, but as I explained in my Corona With a Twist of Lyme: Part 1, it has also been for the most part manageable. 

This post is an update on how I’m doing and what I’ve learned so far, which I hope will have relevance for my fellow Lyme warriors. I’ve realized there are many similarities between fighting Lyme and COVID-19, and I hope that discussing them here will give Lyme patients hope and strength in a time of fear and uncertainty.

At the time of my first post, I’d been sick for two weeks. The first week had progressed as many mild to moderate COVID-19 cases have; it started with vomiting, then a night later I developed fever, then on the day after that, a dry cough and shortness of breath. Those symptoms persisted for the first week. Then the fever broke, and stayed away for the second week, and the cough lessened. Shortness of breath became less apparent. It seemed I was getting better and nearing recovery.

Then, as with Lyme disease, the novel coronavirus threw me a curve. At the start of the third week, my low-grade fever suddenly returned, and the cough became deeper and more frequent. That weekend, I lost my sense of taste, and then my sense of smell. It is  not like when you have a cold and those senses are dulled. Right now, for instance, I can’t detect flavors, though I am starting to be able to  tell if something is sweet or salty or bitter. Smell, on the other hand is completely gone. I hold spices, scented candles, cans of tuna, and brown bananas under my nostrils. I smell absolutely nothing. 

“Doesn’t that usually happen at the onset of COVID-19?” one person asked me. For some patients, it is a first or only sign of COVID-19. For others, the loss of taste or smell symptoms develop later in the disease progression, sometimes a week in, sometimes two or even three weeks in. A family member of mine who tested positive for COVID-19 lost her sense of taste and smell at about the same point in her infection as I did. She got it back a week later. 

I’m still waiting for mine to return, but I’m not worried. Because of my underlying conditions (in addition to three tick-borne diseases, I also have chronic Epstein-Barr virus), it always takes me longer than the average healthy person to get over an acute illness. Sniffles for one person can be a multi-week cold or sinus infection for me. But the important part is that I always get better, and my doctors have full confidence that I’ll beat COVID-19, too. It’s just going to take time.

I’ve written in the past about healing not being linear, especially with the ups and downs of tick-borne illness. I realize that the same is true for my COVID-19 recovery. My fever has gone away, and has then come back, and gone away again. My cough has gotten better, then worse, then better again. Each new wave brings fatigue and frustration, but it also brings me a step closer to recovery. The periods between fevers are becoming longer. I hardly notice my shortness of breath now, unless I’ve been teaching (remotely) for hours or I exert myself. When I was at a low point with Lyme, it was hard to see that I was still making progress, incremental though it was, I was in fact doing so.  That experience helps me to see how I’m slowly making progress with my COVID-19 recovery, too. 

Others have lost their battles with COVID-19, and my heart goes out to their families. I recognize that even though my case has dragged on, I have been lucky. COVID-19 may impact an acute Lyme patient differently than a normal healthy person. Though there’s great variance in how each person’s immune system responds to COVID-19, too little is known about it, just as too little is known about how each Lyme patient will react to Lyme treatment. But we can’t let a fear of worst-case scenarios overpower us. That type of anxiety is a feeding ground for spirochetes, the bacteria that causes Lyme.   

I want to say again that so far, COVID-19 has not noticeably impacted my underlying infections. I haven’t had a flare-up of Lyme achiness or joint pain, or neurological impairment. The fatigue of COVID-19 feels like the fatigue I’d usually feel with a cold or the flu, not the tormenting fatigue of Lyme. My doctors can’t yet say how COVID-19 will affect my underlying infections in the long-term. With Lyme disease, there are so many unknowns, but right now I feel like I’m anecdotal proof that a Lyme warrior can weather a mild to moderate case of COVID-19.

If you’d like to hear more about my experiences with Lyme and COVID-19, watch the Q&A webinar I did with Dr. Cameron on April 16th.

Be well, fellow Lyme warriors. 

Additional COVID-19 and Lyme Disease Resources:

Blog: Corona Corona With a Twist of Lyme: Part 1
Blog: Corona With a Twist of Lyme Part 3
GLA POV: Parallel Pandemics: COVID-19 and Lyme Disease
Blog: Q&A on COVID-19 and Lyme Disease with LLMD
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].