Corona and Lyme

I’m writing this post on what is Day 39 of my self-imposed, turned government-mandated, quarantine; ‘Q-39’ as I’ve been styling it on social media. As you are all undoubtedly aware COVID-19 is running wild across the globe. As of the time I’m writing this over 2.4 million cases are confirmed, with roughly 175,000 fatalities – 45,000 of those in the US alone.

Even with some promising data regarding slowed rates of exchange and ‘flattening the curve’ coming in, fear and anxiety are at an all-time high. Yet amid this overwhelming uncertainty something has happened that I personally never thought would be possible on a large scale. My friends, family, neighborhood, state, country – hell the world – you are all getting a taste of what it is to live with Lyme.

Coronavirus/COVID-19 and Lyme. Parallel pandemics.

Allow me to explain.

To start, I’m not happy to be sharing my Lyme experience with the rest of you. However cathartic it may be to be able to finally relate to people in this way, I wouldn’t want to put anyone through what I’ve been through. You see, Lyme patients know what it is to face the uncertainty of a diagnosis, the fear of non-existent and/or failed treatment, and the impact of isolation. Those who have been fighting tick-borne diseases like Lyme have been living, for years, with the questions most of you are probably asking yourselves now about COVID-19:

Where can I get tested? How reliable is the testing? Are my symptoms indicative of COVID-19 infection or am I sick with something less extreme? Am I actively infected with coronavirus yet asymptomatic? What treatment options are available? Why is there no cure? Will medicine that works for someone else with COVID-19 work for me?

There is a definite link between COVID-19 and Lyme disease in the fear, anxiety, and confusion experienced by individuals who are unsure if they’re infected or not, and how to move forward from there.

And I say ‘living’ with these questions, not ‘asking’, because those fighting CLD, PTLDS, and others who find themselves immunocompromised due to tick-borne illnesses seldom get any answers. Which, again, mirrors the frustration you all must be feeling right now. COVID-19 has no answers, no clear path, no cure, no quick fix. Yes, luckily there are cases of COVID-19 that show that those with properly functioning immune response have a better shot at enduring the infection until the symptoms recede. But even then, how do we know if the receding symptoms are a sign of being cured or not?

Not only that, but the early response to coronavirus by the U.S. was alarmingly similar to the attitude the Lyme and TBD (Tick Borne Disease) community has been at the receiving end of for far too long. When COVID-19 first came to the U.S., both its presence and severity were minimized. People who were afraid and cautious about contact with others, going outside, and the usual day to day way of living were told that they were being paranoid, that it was ‘all in their heads’, and that coronavirus was no different than the regular flu. I cannot begin to tell you how frustrating and maddening it was to see the dismissiveness I’ve been shown and fought against on a national scale this past March. This belittling attitude has consistently been directed against long-suffering Lyme patients. Patients who, as they suffer at the hands of a disease that they must alone try to understand and endure, were told they were being paranoid, alarmist, and irrational for worrying about something that ‘didn’t exist’, and was nothing to worry about.

Timely and accurate diagnostic testing is the key factor in the management and containment of both diseases, and the consequences of a missed or late diagnosis in both diseases can be nothing short of devastating. Although Lyme disease lacks the mortality rates associated with COVID-19, it certainly meets the definition of a pandemic with regards to its global distribution and its global annual case incidence rate (as high as 500,000 annually). According to the World Health Organization there are concentrated areas of Lyme disease cases outside the U.S. in northwestern, central, and eastern Europe, as well as strong concentrations in forested regions of Asia. There are an estimated 427,000 new cases of Lyme disease in the U.S. alone each year, with as many as two million people – yours truly included – projected to suffer from Post-Treatment Lyme Disease Syndrome (P.T.L.D.S.) by the end of 2020.

Sigh.

And again, while it is marginally comforting to know that my experience with Lyme disease is no longer phenomenological – something that solely I and Lymies like me understand – I bear no satisfaction in the realization that the world and all those I love must now get a taste for what I’ve had to live with. All I can hope is that COVID-19 holds a spotless mirror up to the world and shows us that we need to be better about listening to one another - that we learn to be more compassionate and sensitive to those who tell us that they are unwell.

But until that happens, I can only do what I know to work for me in the face of COVID-19. While I may be immunocompromised, I’d like to think that I’m ahead of the game in terms of ‘convalescence’. I know what it’s like to be sick for much longer than the standard length of time. I know what it is to need to isolate myself to recover. And as much as I wish there were actual help and guidance from the medical community, I know how to take care of myself and advocate for my needs.

Right now, for me, it all comes down to doing my best to treat my Lyme, and through that treatment I will get my best shot at combating infection by coronavirus.

To start, Lyme spirochetes (aka, Lyme bacteria) thrive on stress. I cope with a great deal of neurological pain. When I get stressed, I don’t just feel run down and/or anxious like most. My body manifests that stress and anxiety acutely through nerve pain, particularly in my legs and hips where I’ve endured previous trauma but also in other areas of my body like the neck and face. Suffice to say, COVID-19 is stressful, so now more than ever it’s been crucial for me to reduce and manage my stress. Meditation, self-care, listening to my body’s limits, removing myself from stressful situations, practicing gratitude, laughing, eating cake, allowing my mind to “turn off” after a certain time each day – these are some of the strongest things I can do now to fight COVID-19.

You heard me right: eating cake is helping me fight COVID-19.

Well, not exactly. It’s the act of baking/cooking that helps me relieve stress. The cake itself is terrible for me – I ought to be avoiding processed foods entirely right now. But I know my body well enough to know that sometimes a slice of cake, a comfortable chair, and a quiet room is exactly what I need to feel better mentally. Other run-of-the-mill practices in addition to ‘manage stress’ are also in play here. Plenty of sleep, eating foods rich in vitamins and minerals, exercising when/where I can (got my bike up and running for the first time since I left Chicago) and getting outside all still apply during the COVID-19 scare.

Supplemental support, however, is crucial right now, so the preventative care front has been amped up for the foreseeable future. My supplement and medicinal regimen has grown to quite the daily checklist, and while a lot of what I’m taking doesn’t necessarily pertain to the general public, one of the most important aspects of treating Lyme disease that can be a take away for all during COVID-19 is boosting the immune system.

With regards to supplemental support, based on my findings both for me as a Lymie and you as a Non-Lymie, I would recommend Vitamin A, Vitamin D, and Vitamin C. Based on medical recommendation, I’ve increased my intake of these to 25,000 IU of Vitamin A 2x a day, 3,000-6,000 mg of Vitamin C daily, and 15,000 IU of Vitamin D daily. Zinc lozenges and Elderberry/other anti-viral herbs are also in my regimen, and I don’t think either would be a bad idea to take, Lymie or not. But Vitamins A, C and D for sure will assist in supercharging your immune system.

Obviously, I’m not a healthcare provider, doctor, nurse or otherwise, so if you have a PCP talk to them about their recommended dosage. And as a reminder, as with all supplements this is a regimen. Supplements don’t act like a prescription drug that will have you feeling its affects an hour or two after taking it. Take your supplements daily and over a few weeks/a month or two you’ll feel the improvement. Some supplements work quicker than others, and perhaps you’ll feel the benefits after only a week or two, but the name of the game is patience.