Tag Archives: immunocompromised and Coronavirus

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.

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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].

Speaking Up for the Immunocompromised

by Jennifer Crystal

I live in a high-rise apartment building with a common laundry room for hundreds of apartments. The long, narrow room is lined with ten washers and dryers, with barely enough space for one person to walk, much less two. My neighbors and I usually do an awkward dance, squeezing behind each other to get to the dryers, or letting someone push their laundry basket past before opening a front-loading washing machine that blocks the way. 

This system worked just fine until the COVID-19 pandemic. In such a tight space, it’s impossible to practice social distancing, so I’ve learned to do my laundry at low-traffic times. If someone else is in the room when I arrive, I wait in the hallway for them to finish before entering. Then, wearing a mask and gloves, I disinfect the machines and hope that no one else will show up before I finish. Sometimes, if another person arrives, they do what I do: give a little understanding wave, and wait at the entrance of the room until I can load my machines and leave. 

Yesterday, I was not so lucky. I was taking my clothing out of the dryer when two neighbors walked in: one masked, one unmasked. Though our building has a rule that residents must wear masks in common areas such as the lobby, the elevator, and the laundry room, many of my neighbors do not follow it. As an immunocompromised person, this makes me terribly nervous. 

I’ve already had COVID-19, but we don’t know enough about individual immunity yet for me to feel confident that I can’t get reinfected. Moreover, despite my overall recovery—I’m still dealing with a lingering cough—I can’t say with absolute certainty that I’m no longer contagious. For my own safety and the safety of others, I wear a mask and assiduously follow social distancing guidelines. 

I hope my neighbors will do the same, but as I learned in the laundry room, I can’t count on that. As the masked and unmasked people neared me with their laundry baskets, I politely asked, Would you mind waiting just one minute while I finish taking my laundry out, so we can stay six feet away from each other?” The masked neighbor looked a little taken aback. She didn’t wait, but she at least decided to load her clothes in a machine that was further away from mine. The unmasked neighbor pushed right past the masked neighbor, close enough to breathe on her, and started loading the dryer next to mine. I stopped what I was doing and backed away, but the only place to do so, without standing right next to the other neighbor, was the corner of the room. Still, I was only a foot or two away from each neighbor. I waited there, cornered until both neighbors finished and left. 

When people don’t wear masks but keep their distance from others, their choice is personal. But when they don’t take this simple gesture and get too close to others, their choice infringes on another’s personal safety. Now that businesses are opening again, immunocompromised people would like to join the outside world, too, but they worry about how they can safely do so. They can take all the proper precautions: wearing a mask, keeping their distance, and washing their hands, but they can’t control what other people do. And if they live in a crowded area, or have to negotiate tight spaces like elevators, the prospect that others aren’t taking the necessary precautions keeps patients locked at home out of fear.

Part of the problem is that the immunocompromised don’t usually have a physical marker that flags them as such. Another high-risk group for COVID-19, the elderly, can usually be easily identified because of their age. People tend to give the elderly a wider berth on the sidewalk. They have designated shopping hours at grocery stores so they don’t need to come in contact with younger, unmasked people. 

For the immunocompromised, especially those who are younger and otherwise don’t seem sick, staying safe isn’t so easy. Others may assume they’re healthy just by looking at them, and not think it’s a big deal when coming close. Even one of the EMTs who took me to the hospital when I first experienced COVID-19 symptoms said, before learning of my underlying conditions, Well, even if you have [COVID-19], you’re young and healthy, so you’ll be fine.” 

Fortunately, I am fine. My recovery from COVID-19 has been slow, but steady, and I was never on a ventilator. Many other people have not been so lucky, and those who haven’t contracted the virus are rightfully scared of what could happen to them if they do. 

When the pandemic first hit the U.S. and shelter-in-place orders went into effect, my plea to healthy citizens was to stay home, not just to protect themselves, but moreover to protect vulnerable citizens. Now, as areas start to reopen, my plea is, by all means, come out and enjoy yourselves—just please do so with the safety of others in mind. Wear a mask, wash your hands, and keep a respectful distance. That person you brush by in the grocery store could be immunocompromised. It could be me.


Additional COVID-19 and Lyme Disease Resources:

Blog: Corona With a Twist of Lyme
Blog: Corona With a Twist of Lyme: Part 2
Blog: Corona With a Twist of Lyme: Part 3
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
GLA POV: Parallel Pandemics: COVID-19 and Lyme Disease
Blog: Q&A on COVID-19 and Lyme Disease with LLMD


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

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]om.