Tag Archives: Lyme and COVID-19

What Lyme Patients Can Teach Us About the New Normal

by Jennifer Crystal

The start of a new school year is usually a time of excitement: new pencils, new books, new teachers and classmates. While there’s always some trepidation for students, teachers, and parents alike, there’s also a general thrill in the air in September. This year is different. With COVID-19 still very much a threat, schools have been scrambling to figure out the best plans for opening. Some have decided on remote learning, some are doing a hybrid form, and some have left the choice up to parents.

What’s the safest plan for children and teachers? How do we balance physical safety and mental health? How will parents juggle work with homeschooling? These are the questions communities have been grappling with.

For Lyme patients, this isn’t our first rodeo. We’ve had to miss school or work for months or even years due to tick-borne illness. Some children have to do hybrid forms of school, attending for a few hours a day or a couple of days a week and supplementing their education with at-home learning. Adult patients find themselves unable to work, struggling to make ends meet, pay medical bills, and fight for disability benefits. Some, like me, have to alter their work schedule—and their perspective—in order to maintain their health.

Lyme patients know the stress and anxiety that comes with these adjustments. While we certainly don’t have all the answers, we can offer some guidance on handling school and work-related choices during the pandemic. Here is some perspective I’ve gained from years battling Lyme, two of its co-infections babesia and ehrlichia, and chronic Epstein Barr virus (and, most recently, long-haul COVID-19):

  • The situation is temporary: This pandemic may feel like it will go on forever, but eventually, we’re going to be able to go back to school and work normally. For some Lyme patients, this type of full return is not possible, but many get well enough to lead fruitful lives in adapted ways. My own recovery has allowed for different capabilities at different times. It helps to remember that COVID-19 only requires temporary adaptation.
  • There is no perfect choice: Parents are agonizing over whether to send their kids to school. Unfortunately, there is no perfect solution, because we don’t know what will happen later in the fall or the winter. Some communities may get hit with a second wave of COVID-19. Some hybrid plans may work better than others. Children have different needs and capabilities, as do adults. There’s no cookie-cutter answer, just as there’s no set protocol for Lyme patients; moreover, no two cases cause the same exact limitations or have the same solutions. All you can do is make the decision that seems best for your family, based on the information you have.
  • Flexibility: My capabilities with chronic illnesses can change daily. Likewise, the decisions you make now regarding COVID-19 can change. Schools may alter their plans in a month or two. You may find that hybrid schooling isn’t working for your family and you need to switch to remote. You may be working from home now and get called back into your office in the winter. These changes are stressful, but the more we prepare for their possibility, the more adaptable we become. If kids see adults being flexible rather than worrying and complaining, they are more likely to emulate that behavior.
  • Health comes first: This is a hard one, especially when other needs like finances are so pressing, but we need to be healthy in order to work and live well. For years I tried ignoring my illnesses, pushing through my symptoms, and that just made my recovery longer. Making adjustments, taking precautions, and following protocols now will lead to less frustration and fewer restrictions in the long run.
  • Self-care: This one is also hard, especially if you’re working, parenting, and teaching, all from home. There simply isn’t enough time in the day to do it all, and keep your sanity. Lyme patients feel this way when they think about being sick, missing or trying to keep up with work, taking care of family, and paying bills. But even when we’re sick, busy or stressed—actually, especially during these times—we need balance. Be sure to carve out time for whatever it is that grounds you or your kids: taking a walk, meditating, running around the backyard, reading a magazine, calling a friend. These days, it’s especially important to schedule time away from screens.
  • Remember the big picture: For Lyme patients, the big picture is getting healthy, or at least well enough to thrive rather than merely survive. During the pandemic, we have to think about what we need to do to survive so that we can someday thrive. This may mean that your child falls a little behind in school now, or that you aren’t meeting every deadline at work, because you’re also trying to live a balanced life. In both situations, it’s important to focus on the long game.
  • You know what’s best for you: Lyme patients are forever being told that they aren’t really sick, or that they should just do “xyz” and then they’ll feel better. But no one knows your body and your needs better than you do. Similarly, only you know what’s best for you and your family during this pandemic.

The good news about the current situation is that we’re all in it together. Lyme patients usually have a fear of missing out, because they’re the only ones missing school, work, or social events. Now, we can find comfort in solidarity. We will get through this—together!

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].

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].

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].

Lyme Disease Physician Answers Questions About COVID-19

Patient-Doctor Q&A: Lyme Disease and COVID-19

Interview by Alex Moresco

I have spent the last few weeks like many of you inundated and overwhelmed by the sheer enormity of the news coverage about COVID-19. Separating fact from fiction is growing increasingly difficult as panic permeates our community. Typically trustworthy media sources are misreporting the COVID-19 pandemic. As someone living with Lyme disease, POTS and SAD, I sought out factual, science-based knowledge on COVID-19. Toward that end, I recently sat down with Dr. Casey Kelley, an Integrative and Functional Medicine specialist (and LLMD), and the founder of Case Integrative Health, who has been reporting live from Chicago as an Illinois COVID-19 expert on Fox 32, Chicago.

Dr. Casey KelleyDr. Kelley graduated from The Ohio State University College of Medicine and completed her residency in Family Medicine at St. Joseph Hospital in Chicago.  She is a ten-year member of the Institute of Functional Medicine (IFM), a Director on the board of The International Lyme and Associated Disease Society (ILADS), and is a Founding Member of the Academy of Integrative Health and Medicine (AIHM).  Dr. Kelley is also on the faculty at the Feinberg School of Medicine at Northwestern University.

Dr. Kelley answered the following questions submitted by members of the tick-borne disease community.

Q:  First of all, what is COVID-19, and what are the early symptoms we should look out for?

A:  COVID-19 is a new type of coronavirus that is causing mild to severe symptoms in our population. Most people will have a mild form of the illness while some who have underlying medical conditions, those who are over 60,  smokers and those who are immunocompromised are at a higher risk of developing a more severe form of the illness.

Check in with yourself regularly. The most common symptoms to look out for are a fever of 104 or higher, a dry cough and difficulty breathing. Some people are also noting a loss of smell and taste. Less common symptoms include headache and GI upset. Keep in mind, it is also cold, allergy and flu season—if you start to show COVID-19 symptoms, do not panic!

Q:  How is COVID-19 spread so quickly from person to person? Is this virus airborne?

A: As a doctor that is sitting with patients all day, every day, I am constantly seeing respiratory illness. If you have respiratory symptoms it might not be COVID-19, but all respiratory illness is generally contagious so treat this like any other illness and self-quarantine.

COVID-19 can spread through respiratory droplets produced when an infected person coughs or sneezes. It may be possible that a person can get COVID-19 by touching a surface or object that has the virus on it, and then touching their own mouth, nose, or possibly their eyes. So you are not likely to catch it just from being in the same grocery store with someone who is sick.

Many of my patients have been asking me—does this spread before you show symptoms? Yes, just like with the flu, it is possible to spread the infection before you know you are sick. Just because you feel well doesn’t mean that you cannot transmit the infection.

Q:   As someone with other conditions—like Lyme disease—are there extra steps I should be taking to stay safe from COVID-19?

A: There are certain precautions we can take to stay safe. Remember, do not panic, but be cautious. Avoid contact with people who are presenting COVID-19 symptoms. Stay home and self-quarantine if you feel like you are sick. Avoid public gatherings and practice social distancing, this is how we will keep from spreading the illness faster than our hospital systems can handle. At the most basic level, do not touch your face, do not shake hands, use hand sanitizer with 60% or more alcohol content, and avoid touching things like doorknobs, elevator buttons, and credit card scanners.

Talk to your doctor about ways you can help boost your immune system: supplements, IVs, peptides, etc. One of the most important aspects to treating Lyme disease is boosting the immune system so it can fight off the infection) and protect you from viruses and other illnesses you might come in contact with.

Q:  What should I do if I think that I could have possibly come into contact with someone who has COVID-19?

A: First, assess your symptoms, a persistent fever of 103-104, a dry cough and difficulty breathing could be symptoms of COVID-19. If you feel you are unwell, self isolate and then you should call your doctor to discuss your condition and situation. They can help best determine if you need testing.

Q:  As someone who is chronically ill, and now worried about COVID-19, what are some simple things I can do to reduce my anxiety?

A:  Manage your anxiety and stress (which suppresses your immune system) the best way you can.  Find time to reach out to loved ones, take time for self-care—bubble bath anyone?— gratitude, laughter. These are some of the strongest things you can do to stay safe in this time. Set up a phone call with your therapist if you regularly see one. Try not to consume too much news. Set time limits on how much news you watch day to day, and your anxiety should lessen.

Let’s also touch on the importance of lifestyle and self-care. Get adequate levels of sleep, avoid processed foods, eat foods rich in vitamins and minerals. Exercise if you can and get outside!

Q: With the medical community having to adapt to accommodate the COVID-19 outbreak, what has the greatest challenge been?

A: With COVID-19 sweeping the U.S. our work feels like it has greater purpose— to keep patients safe from the progression of the novel coronavirus, and aid in keeping our hospital systems from becoming overburdened and kept available for the most critical COVID-19 cases. In our efforts, we have moved all of our patients to virtual visits. We have also launched small group visits virtually, so we can aid more patients day to day to support their health and immune function during such a critical time. We are happy to help those who are immune-compromised, at any time.

Q:   If you aren’t considered high risk but do have cold and flu symptoms, what is the best course of action?

A: The best thing you can do is call your doctor and immediately socially isolate yourself. The important thing to remember during this time is that most will recover from COVID-19, but we must protect our immunocompromised friends.

Q:  Generally-  what antiviral and immune support protocols should we be following?

A: Supplemental support is crucial right now and we should all be practicing preventative medicine in the coming weeks. If you want to boost your immune system, I recommend: vitamin A 25,000 IU 1-2x/day (NOT if pregnant or if trying to become pregnant), vitamin D 10,000-15,000 IU daily, vitamin C 3,000-6,000 mg daily (watch for upset stomach as a side effect and if so reduce dose), zinc lozenges, elderberry and anti-viral herbs as directed. As always, this is not meant to be taken as medical advice, so please consult your doctor.

Q:  Is it safe to take walks in the neighborhood while you are working from home and you are considered healthy?

A: Yes, absolutely! Get outside to breathe fresh air! And exercise is necessary for everyone right now, if possible. Please practice social distancing and stay six feet away from others on the sidewalks. But don’t forget to make eye contact and wave hello to people you see.

You can find Dr. Casey Kelley on Instagram and her website.

*If you suspect you may have COVID-19, please call the office of your health care provider.

Related Posts:
Letter from CEO About COVID-19 and GLA Community 
Corona With a Twist of Lyme
Alex Moresco’s Podcast: In The Lymelight

Alex Moresco on StageOpinions expressed by contributors are their own.

As someone who lives with Lyme & other illnesses, Alex Moresco’s mission in life is to help others and better the lives of those living with tick-borne illness. As the co-founder of two separate fundraising events in Chicago, She’s raised over  $350,000 for Global Lyme Alliance.

You can find Alex Moresco on Instagram.