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 underlyinginfection 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.
Letter from CEO About COVID-19 and GLA Community
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@example.com.
Great advice. Lyme/MSIDS patients are already ahead of the curve in that we’ve had to learn about our bodies, healthy diet, the need for restful sleep, and supplementing for our body’s imbalances. This is huge. Never underestimate all you’ve had to learn and incorporate into your life as it will help you in so many ways. As the author states, social distancing is a way of life for Lyme/MSIDS patients.
I too feel I had COVID-19 (based upon symptoms – I wasn’t tested, but then again please remember testing for this is abysmal), as did the rest of my family, and many of my friends and neighbors. It was severe and laid me out for about a week but thankfully my immune system is functioning well and I bounced back quickly. I have no long-term effects.
I take a different approach to fever-reducers. I rarely use them. I believe in letting a fever do the work it was designed to do – kill pathogens. I’m obviously not alone in this thinking as hyperthermia is one of the main treatments for Lyme used in this German clinic: https://elemental.medium.com/bringing-the-heat-using-hyperthermia-to-treat-lyme-disease-f61f81706c67 FYI: I heard Douwes at a conference on this treatment and am not convinced it is curative for Lyme/MSIDS. Like all other treatments – relapses still occur.
Be that as it may, heat still helps the body fight infections: https://madisonarealymesupportgroup.com/2018/09/28/hotter-bodies-better-at-fighting-disease/
In fact, if you don’t have a fever you can induce one by using saunas, Biomat-type mats, and hot baths. I’ve used heat therapy the entire time I was in treatment for tick-borne illness and it helps with pain, relaxation, and by heating the body to assist it in killing pathogens. I still use it.
For Lyme/MSIDS patients who are very ill or just recovering, this article is a good read: https://hollywoodlife.com/2020/03/24/justin-bieber-lyme-disease-coronavirus-risks-doctor-interview/
“If they have that other layer of possible chronic infections or have immune dysregulation, they need to be all the more cautious,” Dr. Dempsey
Again, for perspective, look at this graph (as of January 2020) comparing COVID-19 deaths to other diseases:
https://www.sciencealert.com/this-chart-shows-how-the-wuhan-virus-compares-to-other-recent-outbreaks Go here to see the graph more clearly – but COVID-19 is last on the list for deaths.